To Test Oneself

I scheduled my first scan since surgery last week. I will be going to the hospital, pushed through this magnetic donut looking contraption, and then return for a follow-up appointment on New Year’s Eve to get the results. We do this because, obviously, it’s the least invasive way to know what’s going on inside of me. And that’s something I want to know, if for no other reason, because I hate not knowing. I’m of the Type A persuasion, where I want plans, calculations, facts, and understanding, and so I REALLY don’t like just going forward with cancer while not knowing what might be going on in my body. The scan, purportedly, is to tell me what’s going on inside my body, whether the cancer is shrinking, whether it is growing, or whether it’s just hanging out as it has been the last year. Of course, one of those outcomes is more preferable than the others, but I have no control over that. I do want to know what’s going on inside of me, but not just because I’m curious about the present state of my body, but to also know what to expect in the coming year.

I’ve been off chemotherapy since 3 weeks before my surgery, not counting the 5 days of infusions I had in the ICU, and my biggest fear right now is having to go back on it. I’ve gone against my own good advice and gotten too comfortable being away from chemo, not feeling so awful every day and stopping any additional side effects from accumulating in my body. It feels, relatively, great. So part of me knows that chemo is what might have been stopping my cancer from growing and possibly saving my life, but that other part of me hopes it wasn’t, but that something else was at work and going back on it would just be excessive and unnecessary. Because right now, not being on chemo, has given me a window of opportunity in my life, to get back to doing what I love to do most without restriction.

Even as I type this, the cancer cells might be reproducing. I don’t know. And beyond that, I don’t even know what is happening in my body after all the damage surgery inflicted on my insides, or how long that damage is going to last. I don’t know if cancer is growing and I don’t know if my digestion will ever be the same again. I don’t know if my current inability to transfer oxygen efficiently through my body will ever reach previous levels again and I don’t know if the numbness in my feet from neuropathy will ever dissipate. Unfortunately, no one knows. Not me and not the experts. Every cancer patient I’ve talked to about these side effects from chemo and surgery have different stories about recovery, so no ultimate conclusions can be drawn, and I don’t like that. I don’t like not knowing what is going on in my body and what to expect in the future.

Running has trained me to not only be incredibly in tune with my body, but to also expect certain progressions in fitness through consistent and directed training. Within reason, I know the outcomes and expectations of running a certain number of miles a week, of doing two speed workouts and one long run each week, and testing myself along the way. Unfortunately, cancer growth and cancer treatment aren’t so predictable, which is why we do these scans at the very least, to see what’s going on inside the body in one specific regard. We test the body through X-rays to determine what our plan of action is going to be, and although this is always nerve-wracking in some regards, it’s necessary too. I know that I’ll be comforted with the results of this test, even if the results are not what I desire. At least I’ll know what’s happening and I’ll have scratched that Type A itch pestering my consciousness.

I do, however, still have this window of opportunity afforded to me right now, which I’m taking full advantage of again. I’m working with my coach on a dedicated training plan leading up to a half-marathon in May – the goal being to set a “during cancer PR”. I’m back to 7 days a week of running, a long(ish) run of 12 miles, a 50+ mile load, and two speed workouts…just like the good ol days…sort of. Just as I don’t know what’s going on in my body with cancer, I also don’t know what’s going on in my body with running. Everything has changed. The expectations are fundamentally different and we’re learning as we go now.

Where before, when I took a sufficient break from running, getting back into it would be slower, but a turnaround would come quickly and I’d be back to high-performance levels and significantly increased mileage without concern. Now, however, that’s just not the case. Admittedly, I’m only four months out from surgery, with three months of running (it still shocks me to recognize that timeline), but the return to normal expectations is simply not coming and I don’t know why. I mean, obviously I know it’s because surgery completely ruined parts of my body, temporarily at least, and because I have cancer, and because chemo is a red blood cell killing poison, and because laying in bed for a month while barely eating atrophied my muscles, but how to combat all these performance killers is highly elusive.

My body’s ability to regenerate despite all these setbacks is an amazing process, but fitness still remains a consistent battle, a mystery in regards to what we had learned from past training progressions. Recovery is severely compromised and my coach and I decided to switch from one day of recovery between workouts to two for the time being, until the body is forced to get stronger and makes all the necessary adaptations we are striving towards. My range of effort is also significantly restricted, where going from easy pace to threshold seems to come with a simple incline or push in effort. There is no “moderate” pace at this point. There is easy and there is hard…and I don’t know why. I don’t know what’s going on inside my body…but there are changes.

I’m making fitness progress, it’s just very slow. And although I don’t know why it’s so difficult, I do know it’s happening…because we are testing the body. My first 5 mile moderate runs quickly degenerated into very slow efforts, but we kept testing. My next run turned into a 2 mile effort before I had to stop and recover, followed by another mile before recovery, and then the final push. But we kept pushing and we kept testing. The next time I got 3 miles in before I had to recover and finished with a 1 and a half push. And we keep pushing and keep testing. It’s the only way to know.

I hate not knowing what’s going on in my body with cancer, whether it’s holding steady or spiraling out of control, and I equally hate not knowing what’s going on in my body with running, whether I’m ever going to “flip the switch” and run back into the 5:00’s again or stay struggling like mad at 6:45. There is only one thing to do, however, to formulate a plan for the future and work towards the hopeful outcome…to test myself again and again, to get the scans, to run the miles, and finish this process one way or another.

AICR Interview

The American Institute for Cancer Research will be a beneficiary of the Runner’s World Cover Contest. In return, they interviewed me for their blog, of which the content is below.

Click here for the landing page.

Runner’s World Contest Winner: Running through Cancer

Running is a process – and a powerful one, says Scott Spitz, a cancer survivor who is currently featured on the cover of this month’s Runner’s World. A competitive runner, Scott continues to run through treatment for a rare form of abdominal cancer. We talked with Scott about why he runs and how running has helped him grapple with the physical and mental challenges of treatment.

Congratulations on winning the Runner’s World Cover Contest. Why did you decide to enter?

I was a little reluctant to enter because I didn’t want to assume my story was better than others, but I’ve heard from a lot of people who said they gained something from hearing about my experience. I’ve never won anything like this before, and I was humbled and flattered that they recognized the power of my story.

What drew you to running and why have you stuck with it?

I discovered really young that I enjoyed running and had a talent for it. I ran competitively in middle and high school, but then I didn’t run for 13 years after that. I was living in a small town and wanted a physical outlet, so I went for a run and all the experiences came rushing back. I started running regularly again and never stopped. I can cite all the health benefits of running, but ultimately I run because it gives me a sense of accomplishment that has added immeasurable value to my life.

What advice would you give someone who wants to start running or being more active?

First, I would encourage people to find something they actually enjoy doing. Work within your limits and then very slowly start pushing your limits. Understand that it’s going to be a process. I ended up going 5 miles on my first run. It felt awesome, but it was way too much. I scaled back and started doing 2 miles at a time, then 2.5, then 3. Before I knew it, I was doing 13 miles. It’s amazing what we can do when we try, but there’s a healthful, sustainable way of doing it.

How do you encourage your son to be active?

Fortunately, 7-year olds don’t need much encouragement to be active! My son’s mother and I both don’t watch much TV and we don’t have video game systems in our homes. Just living an active life and including him in it is a really big influence because kids like to mimic you. When he comes here over Christmas, I’ll run and he’ll ride his bike along side.

How has running helped you through your cancer treatment?

It’s important to retain as much of your previous life as possible. Running has given me that sense of consistency. It’s something that I did before cancer and it’s something I will continue to do during and after cancer. Running has also helped me deal with the psychological and physical effects of chemotherapy. Cancer treatment is hard on the body, but running has taught me that pain is only temporary. I do think there’s a physical benefit as well. My doctors say, “We don’t know what’s working, so just keep doing whatever you’re doing.” So I’m going to keep running.

What do you think people should know about diet, physical activity, and cancer?

The public has the perception that cancer is a disease that completely stops your life to the point where you’re huddled in a dark corner with a blanket over your head. I want people to know that you can live a very full and active life through this experience. Physical activity and nutrition are important when facing cancer for the same reasons that they’re important for anyone. They improve your emotional state and boost your immune system, which will help you deal with the physical and emotional aspects of facing adversity.

Julia Quam is an Education & Communication Intern at AICR. She is currently completing an MSPH/RD degree in Human Nutrition at the Johns Hopkins Bloomberg School of Public Health. She is passionate about educating others about healthy eating in order to prevent and treat chronic diseases.

Fascination

If I haven’t already mentioned it before, I’m FASCINATED by my cancer. I’m not joking. And I know it borders on the macabre, and maybe even insulting to others, but it’s true. In part, I’m fascinated by my cancer because I never tried to anthropomorphize it, by giving it intent, or consciousness. Cancer isn’t really my “enemy”. It’s…just..just what it is. It’s there. It’s physical. It’s a part of the world, directed by energy and evolution in the same way I’m directed by energy and evolution. We can place all this subjective morality onto everything, but ultimately, we’re just physical beings navigating our way through a physical world. Humans, mushrooms, horses, mosquitos, pine trees, planets…we’re really only separated in the most meaningful ways by our consciousness and ability to consider the happenings around us.

My cancer is no different.

And so I don’t so much “battle” or “fight” my cancer, as live with it, manage it, and do whatever is necessary to stop it from reproducing and surviving as it attempts to do the same with me. We are merely in a battle for resources and survival, just like everyone of us is in a battle for resources and survival with other people, organisms, processes and cultures around the world. It just so happens that the process I’m currently struggling with is INSIDE ME.

And that’s where my fascination begins.

My cancer isn’t an invader, so to speak, but actually a part of me. It is a part of all of us. We all have cancer, in that we all have cancer cells and they periodically reproduce. We also all have systems of checks and balances, however, which stop that reproduction. It’s a clean and efficient system that keeps everything moving along as we’d like it to happen. Sometimes though, systems fail, and that’s when cancer reproduces out of control, desperately trying to survive on the energy of it’s host, which actually keeps it alive. It’s a suicidal mechanism really.

Cancer is in all of us, but it’s not often the same. The typical representation of the cancer process is a tumor, a sort of dangerous bump, that grows on an organ and keeps expanding until it starts to cut off life support systems. That is a necessary simplification, but also just a starting point for laypersons. Cancer, as we also understand, also spreads. It leaves it’s home base and travels through lymph nodes to find other places to live within the body, to reproduce again, to make it harder to eradicate. That…is amazing. This unconscious, undirected process of cellular regeneration seemingly changes DELIBERATELY. It “gets smarter”.

And as unique as we all are as individuals, cancer is no different, so it inhabits and reproduces in the body in many different ways, eluding capture, escaping eradication, and does so on an individual basis. The saying goes, “We are all a statistic of one”, because each cancer is different, each treatment is different, and each person responds differently…making “THE cure” essentially impossible.

Which brings us back to my cancer and my fascination. So let me describe how my cancer works.

Where, from my understanding, most cancers start reproducing as a tumor in one location, affixed to one organ, mine is no different. But my cancer doesn’t just stay on that initial organ as a tumor, growing in size until it starts to choke surrounding life support systems…it actually secrets more cancer cells like..like…a cancer fountain. First, it starts as a tumor, which can be relatively easy to remove depending on the size and location, but instead of traveling through the body via lymph nodes or blood streams, like other cancers, mine grows until it ruptures through the peritoneal cavity wall and starts spewing out cancer cells covered in a protective “mucin”. This freakish, alien-like process causes two problems.

1. The cancer cells are protected by this mucin, allowing them to travel unharmed by both cancer-killing properties of the physical body, but also chemotherapy. The assassins can’t reach their targets. They’re shielded.

2. The protected cancer cells are free-floating, meaning they can drift around the peritoneal cavity and get into all the nooks and crannies of the snaking, overlapping, seemingly endless intestinal tract. All it takes is one cancer cell to begin reproducing again, so when you have not just a tumor to remove, but individual cells all protected and hiding and buried under bodily organs, the recurrences rate gets quite high as removing them becomes incredibly problematic.

Because of the way my cancer reproduces itself a special treatment was created specifically for this process, involving not only tumor removal through knife and blade, but also a “chemo wash”, which entails “bathing” the peritoneal cavity in a heated chemotherapy treatment for 90 minutes, effectively getting the liquid solution into all the nooks and crannies the cancer cells managed to work their way into. It’s equal parts hunting, equal parts hide and seek.

And forgive my enthusiastic way of describing this, but it’s FASCINATING. I mean, cancer is SMART. And by cancer, I mean the processes of life, of the need to survive, to adapt, to adjust, to do whatever it takes to survive in the context of all the world’s complexity. With the right perspective, one can even gain inspiration from cancer, from it’s self-preserving nature.

And, ultimately, self-preservation isn’t reserved for cancer, or “the wild”, or humans in economically troubling downturns…self-preservation is the baseline for existence itself. Self-preservation and our ability to continue onward during our abbreviated moments of existence and consciousness are all one process, interconnected, and undirected. They just are.

So, I can’t hate my cancer. I don’t want it, yes, but I also can’t see any reason to feel offended by it, to feel slighted, to feel ashamed, to feel punished, to feel like I’ve been dealt an unfair hand. I haven’t. I’m just a physical being among all the other physical beings in this abbreviated moment. So then, the only beneficial perspective for which to view my cancer is with fascination. I can appreciate it, respect it, and remain fascinated by it’s ability to preserve its existence, while acting to preserve my own all the same. This isn’t a battle or a fight. This is merely an attempt to retain resources for my use and not anything else’s – creature, being, or process. So instead of lamenting my situation and hating my cancer, I’m just going to stay fascinated by it, and express that same fascination for all the ways human knowledge has found ways to counter cancer tactics for our own benefit all the same.