Today is the 2 year anniversary of the first surgery to get rid of my cancer. It didn’t, of course, but it helped get me to where I am today, while inflicting a considerable amount of damage to my body in the process. I don’t, however, hold a single bit of resentment towards the treatment or where I am at this point physically, because the alternative was much worse. The alternative was a slow, starving death.
On this anniversary, I considered detailing many of the notable things that have happened to me in the past two years, as I experienced incredible highs alongside the more difficult lows. However, it seems more fitting that I give credit to the doctors, the medical industry, and the many people that took the initiative to save my life, while offering my perspective on the many things I’ve learned about the cancer experience, for there are many. I’ve never been the type of person that just lets life happen to them…I want to understand it, as much as I can, and so throughout the past two years I’ve read books that dealt with cancer from varying perspectives, scoured through articles others have sent me, raged against miracle cures offered on the internet, looked for help with diet and lifestyle, and continuously adjusted my perspectives about the cancer experience as a whole. With all that said I’ve come to develop a personal understanding of the cancer experience (by that I mean – diagnosis, treatment, complications, solutions, etc.) and I feel compelled to offer some of what I consider the more important components. Of course, keep in mind, I am not an oncologist, a nutritionist, or a research scientist. I am a continuously learning cancer patient and that is the only “expertise” I can claim.
The point I find I continue to make when discussing cancer is it’s complex nature. I continue to reestablish this fact, because in a culture that craves simplification, the explanations of cancer are always sorely incomplete and the “cures” are all the same. Sometimes we simplify cancer because, pragmatically speaking, it is most effective. A soundbite to secure crucial funding for research or patient support will never address the difficulty of meeting the cancer problem head on. The public wants to believe we are making progress against cancer, that it’s simply a matter of creating the right drug, that cancer is ONE THING and can be fixed with ONE THING. That is plainly, not the truth. Cancer is complexity. As complex as the processes of evolution, always changing, individualized, cancer is the same.
Part of the problem is our terminology. When we say “Cancer”, we simplify it into a being, a repeated element, but it would be more correct (and frightening) if we used the term “Cancering”, as a verb, as a process…because that’s what it is. And a process is often understood as variated, as something that changes, that isn’t the same with every individual. That is how “Cancer” exists. Cancer describes exaggerated cellular reproduction, but that reproduction rarely takes the same form. It exists in different parts of the body, is spread through various bodily systems, is confined in others, and most tellingly…CHANGES AND ADAPTS. Cancer is so difficult to manage because it’s not one thing…it’s cancering…it’s many things. And not only is it many different processes, it’s as varied as the individual it takes place within.
The “cure” for cancering is so elusive because the process responds to the terrain it exists within, that is, every body. Cancering can be more problematic in some individuals because their body is not strong enough to fight back the errant reproduction. Cancering can be halted in others because the terrain is healthy and powerful. Some drugs work to stop and reverse the cancering in certain individuals, but is ineffective in others due to these complex variables that either aid or restrict the cancering. The treatments need to be as individualized as the individual, but how is that ever achieved?
Cancering is so powerful because it is an integral part of systems of complexity. The more we grasp this, the more we can appreciate it’s role, it’s challenge, and our place within it.
Every patient wants to know, “How did I get cancer?” We want to know what ONE thing we did wrong to get cancer, because, we believe, that will help us determine what we need to change in order to stop it and prevent it from coming back. Campaigns to eradicate cancer often attack with the same approach.
Smoking causes cancer. Stop Smoking.
Red meat causes cancer. Stop eating red meat.
Obesity causes cancer. Lose weight.
Inactivity causes cancer. Exercise more.
Again, pragmatically speaking, this is the only approach to which individuals will respond. And yes, you should stop smoking, stop eating red meat, lose weight, exercise more, etc. etc. etc., but again, it’s more complex than that.
The truth is, cancering happens not from ONE thing, but many things. Cancering can be triggered by lifestyle, diet, environment, and genetic make up, but never ONE of those. The process of cancer is a subversion of multiple failsafes, where errant cell reproduction would be stopped by one pathway, it isn’t, and neither the next, nor the next, nor the next, until reproduction spirals out of control. What we struggle to understand is what actions we can take to prevent these failings, because there are so many. Some of these we have come to understand. We know that smoking can trigger cancering, but there need to be a number of other failures that take place before cancer becomes a fatal concern.
And so, ultimately, we can’t pinpoint a cause of cancer…which makes pinpointing the cure just as elusive. We can understand CAUSES of cancer, but then it follows that we need to understand CURES, plural.
In my personal story, I’ve come to understand that I did “everything right” as far as the advice goes for lowering cancer risk…but that didn’t matter. All it means is that I hold no embarrassment for making poor or uninformed lifestyle choices. I’m not saying I’m perfect, but it does go to highlight the complexity of cancer and the need to stop viewing it as a virus, as an infliction caused by one bad behavior. Many people who smoke never get cancer. Many people who exercise do. So where does that leave us? Nowhere good really, but at least it helps us understand the complexity of the process, and can hopefully steer us away from those who try to sell the “cure to cancer” or give the “secret to cancer” or try to fill in the wide gap of confusion and desperation with diets, programs, shaming, and any other misguided attempt to play doctor, guru, or miracle worker.
Sometimes cancering just begins and we need to be ok saying, “we don’t know why”, as we continue to search for more pieces to the puzzle, which we need to also admit may continue to change, adapt, evolve, and remain elusive.
TREATMENT WORKS (HORRIBLY)
There is so much truth to the saying, “If the cancer doesn’t kill you, the treatment will.” This is, obviously, not always true, but it’s also not always false.
With that said, there is considerable backlash against chemotherapy and radiation as a treatment for cancer, primarily because people feel slighted when they watch their loved ones die from what they were told was the only option. The patients themselves begin to wonder if the physical ravages and side effects are worth the treatment at all, and I won’t lie that the thoughts haven’t entered my mind at times as well. What we must continue to remember, however, is how far we’ve come with treatment and that it WORKS…sometimes.
First, let’s address the “sometimes”. We need to continuously remember how complex and evasive cancer is. We don’t have “the cure” or “the cures”, but rather, we have options. We have attempts. We have success stories of killing cancer in individual patients while the same drugs failed to help others with the same kind of cancer. So SOMETIMES the treatment works. Sometimes it reverses the cancering and never returns. And sometimes the treatment doesn’t work. Sometimes it doesn’t reverse the cancering and the patient dies. This means we can’t make a definitive statement either way. We can’t say chemotherapy / radiation always works and we can’t say chemotherapy / radiation never works.
What we can say is, they are the BEST options we have at this point…which, in a way, sucks. I’ll explain a bit further down. Chemotherapy / radiation are the best treatments we have for cancer at this point because the number of success stories we have with cancer are documented and verifiable. We understand how chemotherapy and radiation affect the cancering process because we’ve studied it, researched it, verified it, and have done so again and again. We know the cause and effect of how it all works. And this is what we must continue to rely up on until we find something better or fine tune the treatment to be as effective as possible while retaining the best quality of life for the patient.
But it still sucks. And that’s ok. It sucks because the side effects can be awful, to put it lightly. It sucks because the ravages of the surgeries and treatments can be long-lasting and permanent. My numbed feet can attest to this. Treating cancer is awful…and that’s ok…because it still works and we have countless examples of treatments for other afflictions that suck…but work.
There is a backlash against chemotherapy and radiation by both patient and caregivers that is emotionally based and, if you ask me, unfair. We don’t like seeing our loved ones suffer and so, in the cases where the treatment fails, we hold a resentment against the treatments and doctors and medical industry as a whole. I find this perspective unfair at best and dangerous at its worst. It’s also a matter of relativity. We have no problems with treatments for other afflictions that are unpleasant, but manage through them without issue because we know they help. If an individual swallows something poisonous and the treatment is to immediately induce vomiting…that’s unpleasant, but the alternative is dying of the poison. Other treatments for non-fatal issues involve taking medication that cause nausea, blemishes, rashes, etc., which aren’t pleasant, but guess what…they work…and so we take them. We take the good with the bad.
Cancer is no joke, obviously, so it doesn’t surprise me that the treatment is also no joke. It can suck…horribly…but we’re dealing with CANCER. If the alternative is to do something that causes the patient no discomfort what so ever, I say go for it, but at this moment, that option remains elusive…and any attempt to do so will most likely end in death. So yeah, when it’s suggested that chemotherapy and radiation and surgery are somehow part of a conspiracy or worse than the disease or part of the problem, then I take great insult and have trouble viewing such perspectives as anything less than dangerous.
These treatments are what we have right now and we have few other scientifically verified options with as convincing success rates. They aren’t going to be pleasant, but they work. It’s also important to understand just how far we have come with these treatments. I would never want to go back 50, 25, or even 10 years ago to undergo the same surgery or take the same drugs available then. The side effects used to be so crushing that patients chose to die from the disease than make an attempt with the treatment. This speaks wonders to the medical and scientific communities that continue to find ways to be more effective in treatment and minimize side effects, giving patients a fighting chance.
Cancer treatment today feels horrible, but it works (sometimes…many times), and we need to be ok with that as the research community continues to find more effective treatments and less unpleasant treatments.
IDENTITY & PSEUDOSCIENCE
Cancer is confusing. We know this. There isn’t a doctor out there that will tell you we’ve got it figured out and everything will be ok within 10 years. The problem is, this confusion leaves people grasping and wanting, needing something to fill the space where they wish the answers would lie. But most of us aren’t doctors or research scientists and so we have little to rely on in order to fill that empty space where we wish the treatments and cures were, so we go to what gives us comfort to provide some semblance of answers. The problem is, that comfortable space is dictated by our identities, our sense of self…and not evidence.
I was no different in the past. When I didn’t have answers to life’s questions, I relied on my identity and the pre-fabricated answers to provide them for me. I wanted to believe being vegan and abstaining from drugs would solve all the world’s problems. I, unfortunately, learned otherwise. As I matured, however, I learned to accept that we just don’t know everything..as much as we’d like to. I learned that human curiosity is insatiable and when it can’t find answers to a questions, it will make them up. It comes much easier to explain away our confusion with fabricated answers than it does to simply state, “I don’t know.”…and be ok with that. This manner of explanation is used to explain anything from the origins of life to why bad things happen to good people.
I get it…but I don’t like it. When discussing cancer and it’s corresponding confusion, the need to explain everything is just as strong, and the explanations are often generated through identity, which is both problematic and, again, dangerous. We are dealing with physical processes of the body and we need to keep the focus on those complex processes and not simplistic, magic bullet answers.
I am vegan. I say that because what comes along with that term is the baggage of identity. Vegans, with a capital V, act a certain way, think a certain way, dress a certain way. It is an identity. I am not immune to the pulls of identity, but I’ve consistently tried to break from being A VEGAN and instead be someone who recognizes the injustice of our culture’s treatment towards animals and therefore lives vegan. I don’t eat them, wear them, or use them. Period. I am an individual who is vegan. Just as I am not a runner…I am a person who runs.
Living vegan, however, puts me in contact with many people who do accept the identity of being A VEGAN, and all the baggage that comes with it…the clothes, the interests, the various perspectives..and unfortunately, much of those perspectives are rooted not in science, but in psuedo-science or, what I like to call, “sounds good philosophy”. People tend to make decisions and inform their perspectives not on verifiable evidence, but on what supports their identities.
The vegan identity is one of skepticism, rightfully, and I appreciate that, but it can also go too far. When discussing cancer, the general skepticism towards dominant culture, corporations, and institutions as manipulative and authoritarian becomes seriously problematic when “the baby is thrown out with the bathwater”. Medical institutions, the doctors and nurses, and anyone connected to them are seen as the enemy, so the advice, treatments, and outcomes are all subject to this perception. Everything about hospitals and doctors and treatments becomes a part of this manipulative, evil dominant culture.
I disagree…and I’ll detail this a bit further when discussing the roles and intentions of my personal doctors.
Ultimately, and this applies to identity and not just the vegan identity (I used that as a personal example), there is a formula that develops when we create perceptions about cancer based on personal interests and not science.
First, there is a simple cure to cancer. It’s often either a diet, secret super food/chemical, or way of life, often “discovered” within some remote tribe or ancient people that no one can contact or study.
Second, the FDA is blocking its release. The FDA (an evil institution of dominant culture) is blocking the knowledge of this cure because they are in bed with an equally evil corporation and are protecting their economic interests.
Third, a pharmaceutical company is making a fortune off their drug that doesn’t work. Pharmaceutical companies do make a lot of money off their drugs, but that’s, in part, because they DO work. I won’t belabor this point further as it’s a long drawn out post on it’s own, but the premise that pharmaceutical companies can’t make money off a cancer-free populace is rife with contradictions.
I’ve been offered so many “cures” to my cancer by some well-meaning, but uninformed (and some crappy) people and the one constant that follows these cures is this formula. The “secret cure” is not rooted in anything that is verifiable by the scientific process and has never organically taken off in the cancer community because nothing offered has been able to blanket the complexity of cancer with a simplistic, magic bullet response.
The cancer patient has enough to deal with already and the last thing they need is someone driven by their identity to try and fabricate answers to the great confusion. People facing their mortality are in emotionally desperate circumstances and what they need most is support for THEIR desires, for what they need to feel best about the situation, not any action that is pseudoscientific, not anything that hasn’t been proven to work, not anything that makes the non-patient comfortable simply because the answer fits into their framework of identity.
Don’t get me wrong, I don’t mean to imply there is no worth in an individual experimenting with their treatment, but only if that experimentation is carried out by the individual’s interests and not influenced by exaggerated claims of a “secret cure”. The fact remains, we are confused about effectively responding to the complexity of cancer and so until we figure out how to completely manage the cancering process, alternative treatments should be part of the discussion.
After all, my doctor’s continue to say, “We don’t know what you’re doing, but something’s working…so keep doing it!” Again, the nature of cancer to be specific to itself and specific to the individual means there are many variables that may affect the process, both for the good and bad. This is why when one chemotherapy drug doesn’t work a new one is tried, or when one drug stops working another is added, and it’s why some drugs work in some people and not in others. Those drugs being used, however, have been PROVEN to work through verifiable means.
With that said, I have no problem with an individual adjusting their diet, trying alternatives, or doing anything that won’t interfere with the processes of the drugs they are given. And if they choose to not take chemotherapy or have surgery or go through radiation, and try a different approach, that’s THEIR decision to make. I might personally hang my head and wish them the best of luck, but it’s their decision to make. Without definitive answers that have become the “cures” to cancer, everything is up for grabs.
The problem arises when individuals or organizations profess to have the cure because they had PERSONAL success. There are two problems with this approach. 1. We’ve established that cancer is personalized and so treatments are personalized, therefore, we should always remain extremely reserved in telling other people what will work for THEM just because it worked for US. 2. Whatever alternative treatment a patient undergoes can never be stated as a cure unless that treatment is studied and verified to have been the direct cause in reversing the cancer. If an individual changes their diet and the cancering stops, in no way can we draw the conclusion that the diet is what caused the change. The complexity of variables will always negate the hopeful correlation.
In desperate circumstances, I’m all for the individual deciding they want to try anything to stay alive, but we simply can’t draw definitive correlations without verifiable evidence. It would be irresponsible, dangerous and downright immoral if I were to profess to others that living vegan and running 80 miles a week and drinking 5 cups of coffee a day and eating 3 jars of peanut butter a week and watching 2 hours of netflix a night is what will cure their cancer…but hey, that’s generally what I’m doing right now, so I can write a book, correct?
THE PROFIT MOTIVE
The “cancer industry” (as some like to derisively call it) is often criticized for having a “profit motive”. Well, we live in a capitalist economy. EVERYTHING has a profit motive. The veiled idea is that nothing about the cancer industry can be trusted because it’s not driven by empathic and compassionate people who care for the patients, but rather look at how they can maximize the money going into their wallets by keeping patients sick, by withholding effective treatments, by putting patients through horrendous surgeries because everyone involved will get more and more money.
This is quite an ugly picture to paint of doctors, surgeons, nurses, and medical staff who cancer patients deal with directly. Never once have I looked one of my doctor’s in the eye and saw them staring back with a narrowed gaze, calculating how much money they need from me to install a pool in their backyard. Let’s be real, oncologists are paid very well. None of them are wanting. None of them are struggling. They have an endless supply of new patients and enough money to retire now. They are doing this, in part, because it’s their passion.
And I’m saying this as a staunch anti-capitalist. Yes, “the profit motive” can be corrupting, but as a patient who had his life saved by a surgeon, cared for by nurses, diagnosed by specialists, scanned by expensive machinery, the blanketed blame on the “cancer industry” for ineffective treatments, unsuccessful outcomes, or unpleasant experiences is misguided, unfair and selfish. The “cancer industry” saved my life. The cancer industry allowed me to be here typing this.
What actually surprises me are the individuals stating that the cancer industry is nefarious and heartless, concerned only with making more and more money, are also the ones trying to sell books, advertising on their websites, diet programs, super foods, cures, etc. They are, in effect, working from that exact same profit motive, but under the guise of being “anti-establishment” and with the patient’s interests at heart. Unfortunately, the alternatives they offer are never rooted in legitimate science and only sere to add confusion to the whole experience and not valuable information or advice. They are simply trying to make a profit.
ONCOLOGISTS ARE NOT NUTRITIONISTS
My surgical oncologist saved my life. My medical oncologist followed a protocol based on law of averages in treating me. We are still determining at this point whether chemotherapy was necessary, but at the beginning of treatment, there was no reason to believe otherwise. I was not always happy with my oncologists, especially in my more darker emotional days, but I never believed they didn’t have my interests at heart. I never believed they weren’t concerned with saving my life. And most importantly, I never believed they were perfect and had the answers to everything.
We need to always keep in mind that our society is driven through specialization. We are afforded so much leisure time that we are enabled to discover an interest and, if we want, concentrate on it until we know anything and everything about it, at the expense of knowing more GENERALLY about lots of things.
Podiatrists know feet, but they can’t tell you much about Australian Rules Football. Farmers know the intricacies of crops and yield, but they can’t tell you much about Phrenology. And in these specialized fields are their own intricacies. Podiatrists know feet, but can they tell you a lot about efficient running gait? Farmers know soil composition, but can they tell you about predicting weather patterns? Maybe they both have some knowledge of the corresponding subjects, but that doesn’t mean they can be experts. They are expected to be specialists in their practice and little more.
And yet the skeptics of standard medical treatments want so much more from our doctors. They want them to be doctors, oncologists, therapists, psychologists, nutritionists, etc. Sure, doctors may know a bit about subjects related to the body, mind and health, but we should not expect every doctor to know everything about your health profile. I’ve found that I have to frequently defend the practices of my oncologists and nurses against alternative therapy types who express vile frustration at doctors for not giving them the outcome they hoped for. I’ve watched individuals rail against doctors for not advising them on nutrition. I’ve watched individuals discredit chemotherapy prescriptions because they didn’t also include the coupling of eating certain foods. Essentially, those that rail against the “cancer industry” expect oncologists to be everything from their doctor to their surgeon to their nutritionist, etc. This isn’t fair, nor is this what we should expect from our cancer specialists.
I never expected my oncologist to be anything more than my point person for cancer information and if they gave me any advice on nutrition, I listened, but followed the advice of actual nutritionists for that information. I wouldn’t take cancer advice from a nutritionist and vice versa, but there are those who discredit standard cancer treatments and try to vilify oncologists for not saving their life or the lives of their loved ones, by claiming they are inadequate, that they aren’t holistic. Of course, the preferred approach for these critics is going to a “holistic doctor”, which humorously (or not so humorously), has limited knowledge about and even less power to prescribe life-saving chemotherapy, but instead gives advice on lifestyle and nutrition, which is great, but is also seriously lacking when it comes to actually affecting cancer.
The cancer patient needs to be more pro-active in their role, studying the many approaches to handling treatments through diet, exercise, lifestyle, etc., and not expect an oncologist to be the end all for their personal treatment plan. And no one should be insulting doctors for not being successful in their treatments or trying to present them as money-hungry manipulators, uncaring about their patients, and a cog of the evil corporate cancer industry. It’s one thing to follow your own approach to cancer treatment, but it’s downright wrong to make people distrust oncologists and standard, PROVEN treatments for reasons of personal, individual frustration.
THE COMMON DENOMINATOR OF SUPPORT
The cancer experience is as complex as cancer itself. It is physically challenging, emotionally difficult, often depressing and desperate, and the information available can be overly simplified while at the same time excessive and dizzying. The massive void we wish to be filled with a better understanding of cancering and definitive treatments is instead filled with scientific experimentation, identity based absurdity, pseudoscience, exaggerated claims to secret cures, and a great deal of disappointment. It’s incredibly difficult to wade through and navigate this confusing array of advice and information, but there is one thing that ties together the cancer experience for every patient, and that is the need for support, sometimes emotional, sometimes physical, and sometimes financial.
To be told that the end of your life, which previously lay somewhere in the distance, now has a more definitive timeline is no small thing. Emotional decisions must be made and the individual has serious considerations to weigh in hopes they make the most important and meaningful decisions with the time they have left. Every cancer patient in this position needs the emotional support and confirmation of their decisions, whatever those may be, by the people they choose to include. They need, more than anything, to make decisions on their terms. And even if they make decisions that their loved ones disagree with, they need those decisions supported.
The cancer patient will also need physical support. The ravages of treatment can limit the most simple daily tasks such as turning on the lights, standing up in the morning, or cooking a good meal. The effects of surgeries and treatments can be short term or they can be permanent, but for some period the cancer patient will always need some manner of physical support. If you are in the position of being a caretaker, do not feel afraid to ask what you can do to ease the burden of just getting by.
And finally, the cancer patient will need financial support. As it stands in our country, medical expenses are insanely high. I won’t pretend to know how this all works, why they can be so expensive, whether the value is equal to the charges, or if something more fundamental needs to be changed, but I can attest to the need for financial support as patients go through treatment. We have programs in place that help cover certain costs, whether that is health insurance, Medicaid, food stamps, etc., but there are always significant gaps. The last thing a cancer patient wants to worry about is the burden of keeping their transportation, paying their mortgage or providing for their family while undergoing treatment, but these are very real concerns. Unfortunately, our society often only hears about the debate around health insurance and knows less about the worry patients have to manage when it comes to keeping the lights on and the fridge stocked. As a recipient of generous donations from friends prior to my first surgery, I can directly attest to how important these funds were to my well-being and how they eased my emotional burden, allowing me to navigate the difficulties of cancer without having to struggle in other ways.
This is why I’ve launched the Because We Can campaign, raising $50,000 for Family Reach as a way to directly help patients and their families take care of these other expenses so that they can concentrate on managing cancer first and foremost. In spite of all the confusion, fear, misinformation, lack of understanding, and limited treatments related to cancer, the one constant, the common denominator is the need to support the patient financially. I hope you’ll consider donating to my campaign and spreading the word to others.
I’m glad to have come to a decent understanding about cancer (through the efforts of researchers, scientists, authors, oncologists, etc.), to be able to navigate through the absurdity and misinformation, and to be able to continuously offer something that is a little more practical than I often discover, but I wish I didn’t. I wish I didn’t know about cancer. I wish two years ago I just kept on running and didn’t have my life turned upside down. But we don’t get to choose our circumstances…they just happen to us.
With that said, I’m glad to be alive in order to even develop cancer, and to be alive at a time when medical science has advanced far enough to have a deeper understanding of the cancering process, to be able to execute an incredible surgery that helped saved my life, to be able to receive chemotherapy without the level of side effects that would rather have me choose death, and to have a new timeline of life that doesn’t seem so finite anymore…so that I can help others to my absolute abilities.
Today I ran for an hour and twenty minutes through the woods on local trails, thinking deeply about the value of my life over the past two years, about all the wonderful experiences I’ve had, the generosity of friends and strangers alike, the appreciation to have met Laura and the opportunity to continue parenting my son, and the perspectives that give me grounding and comfort despite a reality that could be relentlessly depressing. Sometimes it’s hard to reconcile that we exist in a time of such incredible confusion and yet such great understanding, but I’m wordlessly grateful to be experiencing it all as we continue on that trail of grounding, of curiosity, of experimentation, and of ceaseless understanding. Someday I hope that brings us to the most effective management of cancer we can possibly obtain, with minimal suffering and maximal honesty.
Friends, let’s not be scared. Let’s be brave.