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.
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.
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.