Uncharted Territory

Today marked my 13th infusion, which officially put me one treatment past the originally scheduled 12. It didn’t necessarily mean anything of significance for me as I’ve already reconciled this new indefinite treatment “plan” and so it was conducted as unceremoniously as the rest. With every extended day, however, brings new questions and considerations, some of which were brought to my medical oncologist today.

The meeting with him was expectedly robotic. I weighed myself before entering the room. Took the thermometer from the nurse and inserted it under my tounge. I could have wrapped my bicep with the blood pressure cuff and worked the machine if she let me.

“He’ll be right in to see you.” she repeated, but which is never true. We waited for 5 or 10 minutes before he finally walked in, greeting me with the kind, but rather tired, “Hello Superman, how are you doing?” and we got on with the assessment.

He asked about my activity levels, appetite and side effect symptoms. I explained that with the oxaliplatin removed, my hands are significantly better and I’m no longer experiencing the cracking, splitting and bleeding in the creases of my fingers. My feet, however, are another matter. Fortunately, the hand and foot syndrome is minimized and so the consistent pain is mostly gone, but the “pins and needles” are consistently prevalent, effectively leaving my feet “asleep” all day. Every step. This, I learned, is precarious nerve damage. I’m experiencing neuropathy in my hands and feet, so that every step is on pins and needles, and extending my arms completely sends the same sensations into my hands. Freakishly, if I drop my chin to my chest quickly it sends a shock of tingling into my feet, the action somehow activating a nerve pathway through my spine I assume. These sensations in my feet have ALMOST rendered my running non-existent.

I haven’t run or engaged in much physical activity for a month or so due to this physical situation, but the past couple days I decided to fight back a little and run on deadened feet anyways, if only for a mile the first day and two the second. I just wanted to see what it was like. Expectedly…although I did it…it sucked.

I’m basically waiting for these sensations to leave my body, along with the drug, but I hadn’t considered that these sensations could end up within me permanently. When the nurse was installing the drug bridge tubing into my port for a blood draw I confided that I really didn’t want Oxaliplatin again today, because my feet were still numb and I was dreading the continuous feeling of nausea and cold sensitivity (along with everything else that horrendous drug activates within the body as it slashes and burns it’s way to the cancer). She advised me to exaggerate the feelings to the doctor in hopes that he would keep it out, and then went on to explain that the drug can create PERMANENT nerve damage and that is what they want to avoid. I was a little taken back at that statement, not realizing my feet could be rendered like this FOR THE REST OF MY LIFE. Umm…no thanks.

Fortunately, no exaggeration to the oncologist was even necessary. He explained during our discussion that he is leaving out Oxaliplatin FOR GOOD. Well…for good as long as the CT scans don’t show any cancer growth. Right now, they don’t, and so there is no need to add the drug back in, as it is indicative that the drug might not even be doing anything. It would be irresponsible, and essentially unethical, to continue the deterioration of my body and therefore my quality of life if the drug isn’t even showing effectiveness to the cancer growth.

I’ll admit, I was pretty relieved, and almost excited that he isn’t going to give me that part of the treatment….which is a little disconcerting. First though, it’s a HUGE relief to know that my treatments are only about 30 minutes now (instead of the 4+ hours they once were). It’s even better to know that I won’t be experiencing the cold sensitivity, gross taste in my mouth, persistent nausea, flu-like sweating, hand and foot syndrome and the slew of other side effects this drug would cause in my body. It was TERRIBLE and I’m not lamenting the fact that it’s gone.

Actually, I’m quite hopeful about this change in treatment. If we haven’t don’t extensive nerve damage to my feet, I can only imagine these “pins and needles” will continue to dissipate in the coming weeks, allowing me to get back to a more consistent running regimen. Now, nothing is guaranteed in this experience and I’ve stopped assuming I know what is going to happen to my body, but taking out this drug does give me some hope for a more normalized routine to come. It’s what I’m hoping for anyways.

But what about cancer, right?

It’s funny to have been flooded with this drug for almost an entire year, assuming it was helping keep my cancer at bay, only to take it away with a sense of relief instead of absolute fear. Granted, the oncologist wouldn’t take this out if he knew it would allow the cancer to grow, and he has stated that if future scans show cancer growth, we’ll have to put it back in to see if it has an effect. With that, he also said two more statements that are worth addressing.

“Again, you are responding to this treatment, which is not normal, so keep doing what you’re doing.”

He has said this repeatedly in the past and I’ve always taken it as encouragement, whether it IS related to something I’M doing…or it’s just mere chance…the fact is that something is “working”, and that’s good. This time, though, I prodded him further about my situation..

“So, now that we’ve taken this drug out, have you seen people’s situations get worse because of that action? Or, and I know we don’t know much about my situation because it’s rare, but do you see a rapid deterioration if it does start to grow?”

He responded more in depth. (and I paraphrase)

“We have entered uncharted territory now. There isn’t a lot of data to examine in your situation. This is an aggressive cancer, but it is also slow growing.”

UNCHARTED TERRITORY he said. Basically, this cancer is rare and, from what I gathered, we don’t know what to expect from here on out. I guess, on one hand, it’s pretty great that I’ve gotten to this “uncharted territory” quite intact, quite capable, highly functioning. On the other hand….what happens in that darkened territory that lies ahead, that unlit experience, that vast expanse of ignorance? We JUST DON’T KNOW.

I wanted to know if, after this many treatments, people deteriorate rapidly and I can expect a shortened time line of being highly functional. I wanted to know if people died within months or years. I wanted to know if people just sustained at a manageable level through treatments for years on end. I wanted some idea of what to expect…but he could offer very little really. My cancer is not only rare, but my personal response to the cancer is rare, and so the ONLY thing we know is that I have made it to “uncharted territory”.

And that is as encouraging as it is frightening.

Admittedly..I don’t FEEL that frightened. I feel fine, to be honest. Relatively anyways. I don’t feel like I should alter my vision of living far into the future, of potentially outliving the cancer inside me. I feel more hopeful that I’ll be able to run on fully functioning feet again, that when the weather breaks I’ll be able to run the trails of Brown County again…maybe even attack them!

Maybe.

At this point…everything is “uncharted territory”.

And maybe it’s a little too sadistic for your tastes, but I tend to emotionally thrive in these situations, in the face of adversity. I find excitement in exploring the darkened corners, of pioneering new paths through my life. Change excites me. If I’m one of a handful of people finding their way through uncharted cancer territory, then I’ll be one of a handful of people detailing what I find out there in hopes that it can shed a little more light for others to find their way.

So at this point, I’m being sent into the dark, but I feel like I’ve got a torch to help me see what’s out there. I’m not walking blindly and stumbling through the black.

I feel like I might be able to start running through it soon, as if it’s not a darkened cavern with precarious unseen cliffs, but rather a new trail into a vast wilderness.

So yeah…let’s go see what’s out there.

Hope vs. Science

I didn’t have to take an AP Biology class to understand how the body works. I just had to start running. By simply putting one foot in front of the other I came to understand a great deal about the body, how it gets stronger, how it weakens, etc. It was absolutely fascinating….and also quite easy to figure out. Cancer, on the other hand, has a complexity in process that continues to baffle patients and doctors alike, forcing us to take shots in the dark regarding treatment and “cures”. I’m in an even more remote corner of that “dark” in that my cancer is quite rare, so the understanding and treatment of it baffles even further. Hell, have you even HEARD of Psuedomyxoma Peritonei? When was the last 5k for stomach cancer you entered? Yeah…on the hierarchical pyramid of cancer awareness, it feels like PMP is a stone that has fallen off the bottom corner.

Regarding the treatment of my cancer, the confusion continues unabated. I get the sense that the doctor’s are at such a loss for direction that they throw me chemo drugs that work for other cancers in close proximity to mine (colon/pancreatic) in hopes that I respond, although my surgical oncologist let on that most people DON’T respond to the chemo treatment I’m receiving. My medical oncologist affirmed that perspective when he encouragingly expressed,

“SOMETHING you are doing is working. I don’t know what that is, but keep doing it anyways.”

But you know what….I’m so tired of this. I’m tired of the back and forth degeneration of my body, the consistent, daily discomforts that consume my every step, the now total inability to engage in intensive physical activities. I can no longer run, bike, hike or anything else that involves any significant impact on my body. Even if I were able to push through the discomfort…why? It’s simply not enjoyable. The last thing I want is a negative association with the activities that give me so much enjoyment and comfort, so I consume myself with other non-physical activities until something forces my hand in either direction.

But what does that entail exactly? As far as I can understand, my doctors plan on giving me chemo until I’m forced to back off, or they continue to hope for a regression of cancer growth in order to make a final surgery an option yet again. Or..I guess…we wait till cancer reproduces beyond all efforts. I don’t know…those are potentials. And all this seems to lie on the premise of taking shots in the dark…right now, indefinitely.

And so I feel a sense of desperation creep in, not so much in a now or never type of futility, but more an influence on my psyche, grasping for potentials, options, alternatives, hopes. Let’s remember, in the doctor’s words, SOMETHING is working..just not working ENOUGH to afford me a physical life I want to tolerate till the end of my days. And so, since SOMETHING is working, I feel compelled to consider the “somethings” that just might be…which brings me back to considering how the body works and what that might mean for my current cancering diagnosis…even if it is fueled by a sense of desperation.

Anyone that knows me well enough will tell you I reject new-age theory, ideas that SOUND good, action based on hope. I look for evidence, concrete conclusions, and philosophical sensibility…but that doesn’t mean all the answers I seek come black and white. Any good scientist will tell you the best answer can sometimes be, “I don’t know.” And so when we talk about all the unknowns related to cancer and the processes of the body that interact with all these unknowns, well, sometimes those forces come together to create unexpected outcomes. Sometimes cancer goes into remission…the process of cancering stops and the tumors die off. Sometimes people stop chemo or outright reject it from the beginning and the cancering stops. Sometimes people make a lifestyle change after diagnosis and the cancering stops.

And we don’t know why.

We can’t point to any one action and say, “THIS is why your cancer stopped reproducing.” We just know it stops…and that’s all we care about.

Here is the consideration I have been bouncing around lately related to all this…what if, just what if ONE way to alter the cancering process involves a connection between a certain mental state and how that plays into the processes of biological functioning. What if our mind has more control over how our body works than we are able to determine at this point?

Now, here’s where I feel compelled to dissuade anyone from drawing conclusions that simply aren’t there. This is all a CONSIDERATION. Just because something sounds GOOD doesn’t mean it’s TRUE…no matter how much our desperation wants us to think so. Just because an eternal afterlife sounds good, by no means makes it a reality. Just because stating that vaccines cause autism gives a sense of comfort, by no means makes it true. Just because stories act as explanations, does not mean they are based in fact. You understand what I’m getting at here.

There are, however, many examples of the mind/body connection that lean towards the idea that we can help our body heal itself through positive mindsets, or even a fundamental shift in perspective. Running taught me more than anything else that when the mind is properly focused, the body can do amazing things, even in the midst of muscle-deteriorating run. I could never recall how many times a deliberate shift in mental perspective during a run allowed me to not only reverse the sense of deterioration in my body, but to then run faster and longer. That, however, does not mean I altered my physical structure in some way. There are other examples though, such as the effect of mental stress upon the immune system and how aggravating mental factors can allow the body to deteriorate, to weaken and become more susceptible to sickness and disease.

Cancer, of course, is a little more complex than that…but I still can’t help consider that there might be more to reversing the cancering process that also entails a shift in mental perspective. What if…and this is another huge IF…the reversal of cancering has more to do with a shift in mental state (stresses, accomplishments, comfort, etc.) than it does with chemotherapy?

Through this experience I’ve heard countless stories of patients who, after diagnosis…or somewhere along the path of treatment, made a significant shift in either their lifestyle (diet, activity, habits) or overall perspective (mortality, quality of life, etc.) and then watched their cancer go into remission…or simply change in some way.

Granted, as much hope as one can draw from such examples, I’ve also experienced a degree of frustration watching individuals adamantly attribute their change in lifestyle as the CURE to cancer. Whether it’s switching to a vegan diet, following a certain method of eating, rejecting chemotherapy, etc., they suddenly claim to have the answer to cancer. In my situation, however, it’s a little frustrating to watch so many people make a change in lifestyle that mirrors what I’ve been doing for countless years now (eat fruits and veggies, be physically active, etc.) and say this is all one needs to do in order to ward off or reverse cancer. Yeah? That sure SOUNDS good.

And here is where my latest consideration grows. What if it’s not a change in lifestyle that helps alter the cancering process, but rather a shift in mental perspective that works in concert with the body that helps stop cancer? What if it isn’t that someone is eating vegan, but that their newfound sense of hope and agency through this lifestyle change has somehow triggered a healing process? What if it isn’t that someone has now started going to the gym every day, but that the power they feel from being physically active and actually making an effort against cancer has triggered a healing process? What if it isn’t that chemo is killing the cancer cells, but that one’s newfound sense of mortality (or immortality for that matter) has triggered a healing process?

My cancer is slow growing. Very slow growing, which means that I was probably dealing with this for a long time before everything came to a head…and that makes me consider what was going on in my life leading up to diagnosis and how this might be playing into the fact that cancer has now suddenly stopped growing in me (in so far as the CT scans tell us). I can tell you this. Although I was eating vegan for 19 years, incredibly physically active, and doing what I felt were all the “right things”…I was also EXTREMELY stressed. Some of this was of my own making, some related to my Type A nature, and some a part of external factors I had little control over. I’ll spare you the details (and spare the emotions of the other individuals involved) but being an adult…with a kid (and a half)…in a deteriorating marriage…in an unsatisfying job…balancing finances…and trying to keep semblance of a very precarious situation led me to a level of stress I couldn’t find an escape from (save the time spent running).

Suffice to say, I was incredibly stressed.

Further, no matter what cathartic releases I had found to deal with the stress, I was still subject to a level of pettiness and frustrated displacement that I’m embarrassed to admit to today.

And then…cancer.

As I continued to walk a tight rope of stress each day, always feeling as if one false move might send my stability into complete disarray, my cancer was growing inside me until it had no more room to grow. So then surgery, and chemo and all that fun stuff…and cancer has stopped growing. But it’s not that simple. Or it MIGHT not be that simple. Through this past year I’ve come to realize that cancer was a positive dynamic in disguise.

It wiped my slate clean.

Life as I had known it completely stopped. My running goals stopped. My financial stresses were erased. The visitation schedule with my son was finally resolved. My unsatisfying job disappeared. Pretty much everything in my life that had me on the edge of collapse dissipated and I was left with a completely clean slate…well…save that whole dying from cancer thing. And that’s where my consideration becomes clearer, because although I could have seen this whole cancer thing as the darkest of corners to reside until something changed, I found a way to not only make the most of it in terms of perspective, but to also use that emptiness that once housed my previous life to build something new, to take advantage of aspirations I had prior to diagnosis, but couldn’t find a path towards.

And MAYBE, just maybe, that shift in perspective has triggered a process to halt my cancer. Mind you, I have ZERO evidence of this, but in the face of so much confusion related to my treatment and the lack of evidence my doctors also seem to harbor..well…why not hold on to the consideration? What if ONE of the factors that allowed my body to start cancering out of control were the stresses that have now been forced from my life? What if ONE of the factors that caused my cancering was related to my inability to focus on the overall positives in my situation in life instead of always being overly critical? What if ONE of the factors that caused cancer reproduction was my displacement of personal frustration onto others instead of finding a new level of security and emotional comfort? So what if I finally found a way out of all that…found a greater value in life…a new level of quality that resides in my mental/emotional sphere and directly plays into my biological processes?

What if I’ve helped stop cancer growth, not by my veganism…not by my running…not even by eliminating the physical stress factors in my life…but by the newfound mental/emotional positivity that I’ve tried to foster in the face of this cancer process?

What if getting off Facebook…pursuing my long-held freelance designing/writing aspirations…not internalizing others negative self-destructive attitudes…allowing myself to love again (and finding someone worth of love)…acting to benefit others at every opportunity…and generally shaping my life in a way that gives me the deepest level of value, has had a greater effect in halting my cancer growth than the destructive powers of chemotherapy?

What if?

Let’s be clear though. These are CONSIDERATIONS. These are mired far more in hope than they are evidence…and that is a precarious place to be, leaving us unable to draw any definitive conclusions either way. That doesn’t mean they are invaluable, however, because when science is offering us little more in the way of both treatment and correlation, all considerations should be up for grabs.

This may be more desperation than grounding, or more hope than truth, and maybe just SOUND GOOD instead of ABSOLUTE TRUTH…but with little else to go on, I’m going to continue pushing this idea of a good life creating a healthy life and see where it takes me.

And it’s never too late for all of us to play out this consideration, diseased or not. After all, what do we have to lose except our frustrations, and nothing to gain but a better life?

World Cancer Day

Yesterday was World Cancer Day (I think…I don’t pay much attention to that sort of thing). It was also supposed to be my 12th and final infusion…supposed to be. It wasn’t. Like everyone else, I went about my normal routine, actually not giving much thought to cancer, also probably like everyone else, even though the specifics had me dealing with it directly again. It has become all too routine, just a minor intrusion in my morning when I’d rather be at home reading with a cup of coffee as company. It has become so routine that the nurse even let me weigh myself at the infusion while she ran my blood work to another office. As mentioned in a previous post this just seems to be what I do now…like going to work. Necessary, unpleasant, and seemingly inescapable. And although I have fallen in line, going about the motions, waiting for SOMETHING to happen, I don’t enjoy the simplicity of the routine, the avoidance of the emotional weight tied to the whole circumstance. That consideration, that weighing upon my days, that cloud that hangs…I just can’t imagine becoming comfortable in its presence. And I don’t like when others become comfortable with it either.

Then I caught her conversation with the nurse in the infusion room. She was young, maybe even younger than me. Her friend, an off-shift RN in blue scrubs, sat by her side as the attending nurse warned her to brace for the stab into the port buried within her chest.

“Take a deep breath..”

A silence followed, then broke,

“OH! That was it?! I didn’t even feel it!”

Her excitement bared her newness to this process, realizing that the physical pains aren’t so bad…at first. She hasn’t been scarred by accumulation, by the things that can go wrong, by the poison that will soon begin to course through her veins, getting pushed outward into her body by a still strong heart, the medicines seeking a specific culprit, but needing to slash and burn through the veil of nerves, capillaries, and anything else that stands in its way. She has yet to feel the life sucking power of ceaseless nausea. It was heartbreakingly sad.

I felt compelled to walk over to her, spare any time-wasting niceties, and just get to explaining the torrential downpour that lies in the bagged storm hanging just above her head. I wanted to warn her, give her advice, hope for the best, but prepare her for the worst. I, however, also didn’t want to be a buzzkill…to rain on her parade of what seemed like a fear-masking enthusiasm. I really just wanted to help, but I walked away and figured she’ll either get more advice than she cares for or just figure it out along the way…like most of us have been relegate to do.

Seeing this new inductee into the Chemo Club and it being World Cancer Day, I started to think a little more about my experience and what I could offer those who have suddenly found themselves in this confusing and quite strange world, where we are in the contrasted positions of having to face down our abbreviated mortality, yet also find our way through the world still. And that’s just those of us who have no choice.

I also thought about what I could say to those on the other side of the bubble, that envious position of great privilege and, I now realize, an incredibly care-free existence…because no matter how fundamentally different our perspectives may be considering the positions we have found ourselves in, what side of the line we stand upon, we still get to interact with each other. Cancer, fortunately, doesn’t lock us away into iron lungs.

With all that in mind, the following suggestions came to the forefront without me giving it much thought and so seemed pertinent enough to offer up for consideration. It should be noted right away, however, that the cancer experience is HIGHLY individualized and my suggestions will not work for others and vice versa. This is just one more contribution to the canon of experience. Do with it what you will.

Live Your Life

Cancer patients have little agency over what is actually happening to us, over the biological cancering process. Yes, if you smoke…don’t do that. If you eat foods shown to increase cancer risk (though that evidence…across the board…is quite shaky) don’t do that. If you do all those things that you obviously shouldn’t be doing, that lead to higher cancer risk (drinking carcinogenic chemicals and stuff)…don’t do that. But really, there isn’t much more to do in actually stopping the cancering process. There isn’t much “Fighting back” or other feel good phrases offered up to us. That, however, does not mean you roll over and die. One of the most powerful ways to respond to the cancer experience is simply continuing to do what you did before cancer, living your life.

Here’s the catch though. If cancer doesn’t stop you in your tracks, chemo might. The physical problems associated with chemo “side effects” (they should be called “Forefront effects”) might literally prevent you from living your previous life. I’ve basically been rendered unable to run or cycle at this point. It’s difficult to do anything physical besides basic routines, and even those involve a great deal of discomfort I’ve learned to tolerate. I have also, however, been able to continue on to some degree. I haven’t given up EVERYTHING. I’ve always read from a young age and cancer has not stopped me from doing that. Every morning I get up and read while drinking cups of coffee. That has always been a part of my life and I don’t intend for it to be taken away. And that is key to remember, that the little things no longer become little…they can mean the most when you have so little left. They are a piece of your life that the cancer experience can not take away and it is crucial to hold onto them, focus on them and do your best from letting them slip away…whatever they may be.

Your life WILL change. You will not be able to continue on as you once did, but that doesn’t mean it’s ALL gone. Live your life, no matter what part remains.

Check In (for the non-cancering)

The cancer experience is not easy, I dare say, for anyone unfortunate enough to face it down. And depending upon how we carried ourselves prior to diagnosis, our ways of processing everything that comes along with it will vary too. Some of us will find strength, others fear, and others may find themselves emotionally crippled. Probably more common, we will go through a process of emotional highs and lows, finding value in the experience one day only to be completely worn out the next. It is crucial to recognize each emotion and each moment as valid, because they are, but this poses complications for those around us. It is understandably difficult for you to navigate our emotional fragility and seemingly bi-polar swings of demeanor, but there is one way to keep everything as stable as possible…check in first.

Check in with us. ASK us how we are doing first instead of crashing in with jokes, complaints, and frustrations. Walk softly around us until we give signs of our current mood and follow that lead, because although you may want us to be in a specific mood that suits your circumstance, ours can tend to be a bit more pressing. It’s not easy, I know, but I’ve come to realize that so many small things can become huge triggers to my emotional state. Songs, movies, commercials, conversations can snap me from my light-hearted mood or expected routine and shove my potentially abbreviated mortality back in my face. It’s hard because the person we were prior to diagnosis is often the person you expect us to be…but that can all change with these darker considerations. It is crucial for you to see us in a new light, as we have now found ourselves standing beneath, and always check in with us. Ask us how we are doing in the moment and follow our lead.

Do The Research. Ask The Questions.

I walked into this new world expecting all the confusion to sort itself out, to be guided by the hand through the process and told exactly what is going on. I was going to be told my survival rate. I was going to be told all the specifics about the cancering process. I was going to be told about chemo side effects. I was going to be told about options and future plans and anything and everything. Guess what…I wasn’t.

In just a few weeks I went from a seemingly healthy and capable individual to being pointed to the surgery entrance, unaware just how serious my cancer was, how far it had progressed, where I sat on the “points scale”, and when the surgery had a very limited effect, I felt like I was told even less. I didn’t know my chemo schedule was going to change until I almost hit my last infusion. It was never explained how cancer even works in the body. Alternative options to treatment were never explained (I wouldn’t have taken them anyways). It wasn’t explained that I needed to get nausea pills after my first infusion. It wasn’t explained that I needed to reorder chemo pills on my own. No one tells you how specific chemo medicines even work or IF THEY WORK. An oft-used phrase I’ve learned is, “The truth in small doses”, meaning the patient isn’t given the entire grim picture, because the fear is the patient can’t handle it. I’m not that type of patient.

So, a little late in the game, I found myself asking more and more questions. Instead of just letting my oncologist run down the checklist and sending me away, I started asking more “What ifs”. “What if the chemo doesn’t work?” “When can we consider surgery again?” “Does the cancer grow if we start to back off from meds?” Etc. etc. I also started reading. I wasn’t that compelled to read books on cancer, but the more I realized how little the general public, including us patients, know about the cancering process, I realized I needed to educate myself more, if only to become more calm in the truth of it all…in much larger doses.

Be Skeptical…Very, Very Skeptical

In a way, cancer is no different than pregnancy, well, in the way that EVERYONE KNOWS WHAT IS BEST FOR YOU. It is different than pregnancy, however, in that most people who know “how to cure cancer”….have never had cancer. In pregnancy, people speak from experience. In cancer, people speak from identity. I’ve come to understand that the general public really doesn’t know how cancer works in the body (because the complexity of it can’t be contained in cute, succinct sound bites) and so many individuals are prone to buying into secret, simple solutions. THIS chemical compound. THIS diet. THIS ingredient. Etc. etc. etc. Everyone has THE SECRET to CURING CANCER…but, of course, only THEY know about it because the “cancer industry” and “pharmaceutical companies” don’t want you to know about it!! You think this is exaggerated, but I hear this sort of non-sensical drivel all the time. In most situations, it’s mildly annoying..in others it’s downright infuriating. Be prepared for it.

You WILL find yourself WANTING to believe these miracle cures. You will consider juicing, only eating greens, debating the potential of stopping chemotherapy, getting your chakras aligned (ok, maybe not that one) or whatever. The cancer process is so complex and, at this point, impossible to pinpoint that we are left struggling for answers. Hell, even the doctors will tell you they are often taking shots in the dark with medication and hoping that SOMETHING works for as long as possible. The picture isn’t pretty and the desperation can look even worse.

All I can offer as comfort is do what feels appropriate to you, but also do the research into determining what has been PROVEN to have solid results. Consider where the information is coming from and if the person giving it to you actually cares about your well-being or if they are extending their personal identity or agenda.

Reject The Cancer Identity

The cancer experience sucks. I don’t care what value one derives from it…the physical difficulties of dealing with cancer are NOT fun. Some people lose their hair, some can barely walk, some puke incessantly, some feel disgusting all day every day, some bleed from their hands, some lose control over their bowels, and on and on and on. You may be fortunate to have very few side-effects from chemo or direct effects from cancer, but no matter how small, you’ll wish you never had them in the first place. You’ll want them to go away. And this is why I’m confused when people wear cancer like a badge of honor. For those of us dealing with it, we have no option but to accept it in our lives to a degree, but it confuses me when others take it on completely, even celebrating it.

Mind you, I don’t fault anyone for doing whatever they have to do to get by, to make the experience a little less shitty, but I’m not sure how I feel about the celebration of cancer by both patients and supporters. I’d prefer us all be honest about the nuances involved. The last thing I want is the newly diagnosed feeling they have to “be strong”, to feel compelled to celebrate their circumstance, to wear a bald head like a crown…when in actuality they want to be allowed to be weak and frail, to wallow in their frustration and hide their physical appearance. They should be ALLOWED to do that. They shouldn’t have to be “fighters”, “survivors”, etc. If they need that identity, then go with it, but it seems to me that our culture ONLY gives us that option and not the alternative.

Don’t get sucked into the identity of cancer that says you have to be positive, strong, a pink flag flying warrior, an inspiration to others, or any of that other campaign created persona. You are what you are and that’s good enough. The cancer experience sucks and the only obligation you have is to exist through it…that’s all.

Give Credit

I wish, when a cancer patient “defeats” cancer, they could say, “I beat cancer! I did it! All by myself!”…but that’s not how it works. In actuality, there are countless numbers of individuals that worked together and by themselves to help stop the cancering process. Some of them are scientists in labs, some are doctors, some are nurses, some are fundraisers, some are visionaries. The cancer patient, unfortunately, may do the least in the whole process. That isn’t to say we don’t have a bit of agency over our outcome. The fact that we don’t throw ourselves off a cliff while smoking cigarettes, stuffing hot dogs in our mouths, and drinking bleach says SOMETHING about our attempts. Still, the nurses that comfort us. The doctors that evaluate our progress (or regression) and change our meds. The fundraisers looking to finance crucial studies. The scientists peering into the microscopic world looking for answers. All these people are working to help us live the fullest lives possible and they deserve more attention than we give ourselves. At every chance you get, give them thanks for the work they do and the strides they’ve made in helping us understand cancer and experience life for as long a possible.

Live For The Future…And The Now

When you really have no idea how long you are going to live in the face of cancer, whether that is a full life or something more abbreviated, it makes it hard to really plan for the future. You doubt relationships, kids, employment…everything. And that’s understandable. When the hours you have left on the earth suddenly become potentially numbered, you find yourself not wanting to waste a single one. Unfortunately, this can become a crippling stasis. The desire to throw yourself into long term projects holds a sense of futility, but without other viable options for short-term living, you find yourself hanging in the balance, lost as to where to put your efforts. You have to make a choice one way or the other…or both actually.

I hate it when people say, “Live as if every day was your last!” If we followed such empty phrases literally, we’d all be broke and either addicted or dead. It’s NOT a good way to live your life actually, and for those of us who are accepting that we may actually have to consider living an abbreviated timeline, it’s helpful to ignore such advice and take a more nuanced approach. I DO think you should live for the future, making long-term plans and investing in long-term projects, using this opportunity to build the life you want…yet at the same time not taking advantage of those more immediate moments, those opportunities that will fade and disappear in the obligations of everyday life. The problem, is balancing the two. I can’t give you advice on how to do so, but I will reiterate that you don’t have to deny either. There is a way to live for the future, but take advantage of the now as best you can. If the alternative is simply hanging in the balance, WAITING for cancer to decide for you…well..you’re missing out on a lot in life. Don’t let cancer dictate your options.

Swallow Your Pride And Accept Help

When I made my diagnosis known, people came from the far reaches of the world (literally) to help me. Being a prideful and self-reliant individual, I had a hard time accepting their offers. I wanted to deal with finances on my own. I wanted to make my own food. I didn’t know how to sufficiently repay others for their support and kindness…but then I realized, these friends are as helpless to cancer as I am…as we are. They WANT to help because, to them, it’s the only way they know how, and to leave their offers unfulfilled, also leaves them unfulfilled, as helpless as they were before. When I finally came to terms with that realization, it was only a matter of swallowing my pride and allowing them to help, even if I didn’t need it so greatly, I knew they did and that was just as important.

There is no reason to go through the cancer experience alone and considering some have no greater support structure to deal with their personal battle with disease, it is insulting to not accept the support and encouragement of others. Having to swallow your pride is far preferable to swallowing loneliness.

Love Yourself By Shaping Your Influences

You may find yourself very sensitive to your surroundings…at least I did. The emotional intensity of this whole experience has left me susceptible to so many different emotional triggers, whether they be movies, relationships, friends, etc., and sometimes those influences can be supportive and sometimes they can be negative. It’s up to you to shape your influences, to take in what you feel will best support you emotionally.

I used to be a Facebook junkie, but after coming to terms with what I was putting out in the world I backed off, but just as equally, I realized I was receiving so much negativity and petty complaints through the medium as well. At some point I had to completely deactivate my account as engaging with it left me either frustrated or just plain sad. All the same, I’ve found that I just can’t handle certain people anymore and I’ve had to minimize them in my life, but on the other hand, I’ve also been able to bring other influences into my life that give me great joy, whether that is specific music, certain friends, or other activities that help protect me. You may find yourself building walls between your new life and your old, and that’s completely ok. What is most important at this point is to protect yourself emotionally. You have enough to worry about and the best way to handle this new emotional weight is by creating your life in a way that makes dealing with it as easy as possible.

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To reiterate the initial point, these suggestions are what have resonated with me through my experience and yours may be entirely different. Don’t think you have to take my advice or that I have any secret to this process…I don’t. I’m just as scared and confused as everyone else and am just trying to make it through as best as possible. Unfortunatley, I’ve had to stumble through this from day one and learn a lot of these lessons on my own, so I only hope that some of these suggestions will stick with you and you can use them should you have to face down similar obstacles. I wish for you the best.