I never truly realized how complicated cancer could be until I faced it head on. Part of what makes it so complex, I believe, is the fact that illness or not, we still have that inner gremlin inside all of us that tells us to care what others think. It reminds us that we don’t have it as good as others do. It urges us to focus on the flaws, instead of the fabulous.
I remember months ago telling somebody that at some point, I may have to undergo a systemic treatment that could be for the rest of my life. Without missing a beat the person said, “That’s OK.” And of course I immediately agreed with them, because that is what you’re supposed to do: You put on your Positive Pants and nod and smile and say, “Of course. If it saves my life then I’ll do whatever it is that I need to do.” You want to reassure the person (and yourself) that you’re ready for battle and that no matter what, you’ll do what needs to be done.
And it’s not that that statement isn’t true, because it very well is, and it lives and breathes deep inside of you. It’s just that maybe there’s more to it, and maybe, you want to say so without feeling like you’ll be judged or struck by lightning (or give those gremlins sharper teeth).
When you have a life-threatening disease, when your doctors have made it clear that nobody knows how long somebody can live with an “incurable” illness, your inner gremlin comes alive (if it was dormant before). It chomps at the bit, drooling over what an opportunity this becomes to make you believe that you’re weak, that your body is weak and betraying you, that life has betrayed you and that you are unhappy and will never have what others have. That pot of gold; that endless trail of love and laughter and family and kids and a legacy and a career and baseball games and sandy days on the beach with pails and shovels and having breakfast with the Disney characters in Orlando and watching your love grow for years and planting gardens that you never even think you may not see bloom– it all evades you (or so your gremlins want you to believe).
When I started another life-saving treatment recently, I felt a surge of appreciation, maybe even
happiness luck (whoa, that sounds weird), coursing through my veins. I know that not all Stage IV cancers even have treatments. Not only that, but I only have to drive 45 minutes to get it at truly one of the best hospitals in the world, with one of the top melanoma doctors in the world. That luck or care or fate or whatever you want to call it never passes me by without a flush of deep gratitude.
But then I had other thoughts, after the thank g-d I can get this treatment and I live here and I have people to come with me to Dana-Farber and I’ll never be alone. These are not little things, but I had other thoughts that I wasn’t sure I should even say out loud.
Like: What if I get sick? What if I get a side-effect from the drug and it keeps me alive, but I have the side-effect for the rest of my life? Yes, of course I worry that the treatment won’t work (that’s my #1 concern, obviously), but I also worry that I will have rashes or headaches or stomach problems forever. Or, that I may gain weight. It sounds amazingly shallow and absolutely crazy, doesn’t it? Like who cares if you don’t look good in a bathing suit if you’re alive? But that’s not really what it’s about, I’ve learned. Really. (Except in a society where beauty seems so important, I guess worrying about these things just makes me feel like any other “normal” woman).
What is it really about though? It’s about feeling good. It’s about having energy to live your best life. It’s about a good quality of life, not just breathing, but living. It’s about feeling like something in your chaotic world is in your control. You may have to take a drug every few weeks to try and save your life, but what if you don’t get a side-effect? Does that mean that the medicine is not working? (I checked myself for a rash the first 72 hours after treatment in the hopes of actually witnessing my immune system ramping up, as if it could happen that quickly? Or somehow that would mean that the cancer cells would already be destroyed? My heart jumps with hope even as I write that last line).
Can the two co-exist? Can I be incredibly grateful for this treatment and also scared of being sick? Can I be scared that the treatment won’t work and also relieved if I do get a rash? Can I drink a green juice one day and make those kick-ass brownies another and still feel that I am doing everything that I can? Does everything have to be this complicated, or am I making it so?
I’m afraid that if I say that I don’t want to get sick or I do want to get sick or I don’t want to be stuck at home or I am bummed (for lack of a better word, and I just stared at the computer screen for minutes on end trying to find one) about being treated for the rest of my life (possibly) that would mean that I have some part in what happens. That my mind is connected to how well this medicine works. I get sick, I get well. I feel well, I get sick. Does it really work this way? If anything could save me from this awful stupid unfair disease, I would do it/say it. But what is it? A green juice + not being able to leave home from side-effects? Or if I want to get treatment and still just feel and be a normal person, I will be struck by lightning? Perceived by the universe as ungrateful? Misunderstanding the seriousness of how much I need this treatment?
I promise you I don’t.
I do understand how important this treatment is, despite what may or may not come, but I also think that cancer brings with it so many different complex issues. We want nothing but time and we want to live as long as possible, but we also want to live a full life where we can travel and work and see friends and feel good about ourselves, our bodies, our choices, our lifestyle, our experiences. And I shake as I write this, because never before did I realize or sit down to write the thought that life may not be worth living if I get that sick that I can’t actually live. I do not expect this to happen, but when we take down that wall between me and the rest of the world, the wall between me and you, the truth of it all comes rushing towards us. Let us be authentic, let us talk about our fears in the hopes of cleansing and finding a greater faith, let us speak the truth out loud in the hopes of healing. Because that, my friends, is the best part of life: The truth, and how it really can set us free.
I’m not sure if I’m quite there yet. But just knowing that you allow my truth to be part of who I am is, for right now, more than enough.