Why my life goal list doesn’t include beating cancer

This week at the dermatologist’s office, the young woman behind the desk asked why I had come in, after I requested some skincare samples to make my visit more pleasurable. I pulled up my shirt to reveal heavy white bandages down my side, where I had had a few skin biopsies. “I’m a cancer patient,” I said. She then did that thing that most people do when I reveal my health status: she looked into the air around her as if searching for the perfect relative she could pick out from the oxygen surrounding her head. “My great uncle had cancer,” she found someone and proceeded to tell me about a bone marrow thing, not sure what, but I think it saved his life.

“Oh well, then, you know,” I said, being polite, because she certainly had no idea, as evidenced by her next comment.

“You’ll beat this,” she fisted the air with an imaginary pom pom.

“No,” I said, “I probably won’t.”

“Oh stay positive,” she cooed.

I replied, “You know I’m not really that sentimental about life,” which is true. “I mean when my number is up, that’s it.”

And then she kind of did get it. She got something at least, “Oh, so you’re just going to enjoy the time you have while you have it.” Yes!

Don’t get me wrong, I love life, but I don’t feel this grand attachment to mortality. In some ways, I believe we are all immortal and mortal at the same time. Our bodies are mortal. The rest of us…I have my beliefs but I’ll find out at some point. As will you.

This interaction got me thinking about the idea of “beating” cancer and just how silly it is. None of use will “beat” anything. We will live with it, whatever that “it” is for us, struggle through it, embrace it or not, until we die. No one cheats death. Nobody lives in this form forever.

As I come to accept my own death and as my attachment to this life gets less intense, the bonds I have with my body, my moments and paradoxically even to this life get stronger. I feel more plugged into it but less concerned with outcomes. The grand outcome is the same no matter what path I travel.

There are still things I desire before I drop this body. I’m not above vanity or wanting to feel liked and successful. I have moments driven by Facebook or Instagram likes. That’s all part of being a person today. There are a handful of experiences I hope to have before I die. But when I think of what those experiences are, beating cancer is not on that list.

I would love nothing more than to no longer have evidence of this disease in my body. I would give anything to have an easier path to the end and to be able to meter any future loss. But those things seem like empty focuses and nothing more than wishes or prayers. Because they are totally out of my control.

What is in my control is how I put one foot in front of the other towards the goals I have, how I take in each footstep, how I acknowledge the people around me at any given time. And, of course, keeping my medical appointments and continuing to make the best health decisions with the information I have. The rest of it – whether I reach my desired goals or “beat” this disease – well that’s that stuff of surrender.

For crying out loud, don’t call me a warrior

Cancer and war language are so often linked. Someone battles this disease. They are a warrior in combat day in and day out. Many people feel empowered by painting themselves as fighters. But I am not one of those people. Here are some of the reasons I steer clear of conflict-based language when it comes to my existence.

  1. This warrior will lose. War language seems to be more embraced in the “survivor” community. Perhaps because there is a sense of having fought and won. But, with stage iv, that’s not generally how this works. Most of us will die of cancer. We will be the failed warriors that perished during our valiant efforts. On some level, we have already lost. No thanks. My mortality knocks at my head on a daily basis. I don’t need words to remind me that my time is most likely limited and oh so hard. And that all of this will wind up in defeat. I’m here until I’m not.
  2. Why reinforce the challenge? There is already so much conflict navigating cancer. So why would I want to reinforce the brutality and decimation this journey brings? Someone once told me that what you choose to focus on will grow. It seems by setting myself up as a fighter, I will always be fighting. But I’d rather focus on the pockets in between. That’s where I get to find life. I am living with cancer.
  3. Personifying gives this thing more power than it deserves. Cancer is one of the only diseases that is highly personified. It’s treated like an outside entity, an opponent or a serial killer, you have to evade or spar with on a daily basis. Granted, that’s what it feels like most of the time but, the truth is, cancer is just wonky biology. There’s no face to it, no body, no one to punch or push or yell at. It’s a big sack of “they don’t know why you have it and other people don’t” along with the bag of unknown as to whether the treatment will work for any period of time. Because what they do know is whatever treatment you are on when you are metastatic, will ultimately fail. But back to the personification aspect – I’d rather not give cancer more power than it deserves. Having a body is a privilege. Being a person is a gift. Cancer doesn’t get to be that. Cancer gets to be the shitty cells not doing the gift of my body any favors.
  4. Just being a person is hard work. Following this logic, we are all warriors. Life is a challenge for anyone. Getting out of bed, no matter your circumstances, makes you a fighter. I am not looking to over-identify with this disease or trump any else’s experiences. We are in the human trenches together as one. I’d rather not extricate myself from that or set myself apart. Doing that would be a good way for me to foster entitlement, cut myself off from being of service and let depletion take over even in times of rebuilding. Let’s be human together and support each other during this weird, beautiful and often difficult ride we’re on. 
  5. Facing life. During this journey, I try as much as I can to stay life facing. Words matter. If I am going to plug into vitality, vibrance and being, when I have the energy, this needs to be reflected in the words I use and accept. I know that my future reality will include hospitalizations, tears on the bathroom floor, challenges with mobility, the list goes on…all of that scares me. But if I can move through the good moments consciously and with a modicum of healthy denial, without giving too much verbal form to future gloom and doom, the current ride is way more pleasant. I find ease with easy language. I feel life with life facing terminology.

My delicious lack of life perspective

All of the perspective I’ve gained due to cancer is gone and I couldn’t be happier…

These past two weeks I have taken things personally, gotten attached to the wrong people,  focused on what I don’t have in life and what I have not yet achieved with the anxiety of maybe never achieving those things. And I am loving every moment of it. Every pang of unfulfilled desire, of insecurity and inadequacy. Every feeling directed towards the fleeting and inconsequential.

This means that not only am I still alive but I have physically plateaued enough to mentally accommodate the mundane. I get the luxury of the human experience outside of just rebuilding and surviving day to day.

Of course ordinary human feelings don’t always feel good. Especially when they are born out of this delicious lack of life perspective most of us carry around. When we focus on the exact wrong things to fill voids. Chase those things instead of seeing and fully accepting what’s in front of us.

But the ability to go down that type of rabbit hole is a gift.

It’s also quite humbling. It levels us all, connects us in a way. It also has let me know that I have not completely evolved out of the problems I had when I pulled onto the cancer highway. There is a weird comfort in that.

Sometimes it can be exhausting to have more perspective than the average person so it is really nice to have the opportunity to know that I may not have as much as I thought.

Making my mark before I die

One of the anxieties I faced early on post stage IV diagnosis was about the mark I was going to leave on the world before I pass. I come from a family of doers and achievers and have never fit into that box myself. My biggest accomplishments were overcoming emotional hurdles or connecting deeply with others. My diagnosis made me feel like I had nothing to show for my 40 some odd years and perhaps I needed to race to validate my existence. I needed to do something big, win an award, be a “someone” to have mattered.

So I started making plans…I got a literary agent and am writing a book about cancer but also about body ownership, sex and how to feel alive in the face of a terminal diagnosis. My best friend and I are working on a fictionalized version of my story for a tv show that tackles some of the same issues, including the levity of sex coupled with the heaviness of cancer/death. And I was invited to walk in this year’s New York Fashion Week for a lingerie designer, who designs intimates for women affected by breast cancer.

I figured if any one of these things hit, I would feel more validated as a human, more relevant as someone who has been here.

The first endeavor that came to fruition was the fashion show. I was excited and used the event as a way to announce to friends and family what was going on with me, as previously I had hid my cancer diagnosis from most people. It was important for me to “come out” not as a patient but as an exceptional woman who was doing something.

But a funny thing happened in New York…I stepped out of my comfort zone, walked in fashion week. My picture was in Elle magazine among other places. Had I arrived?

The answer is no…After the event, I looked at the pictures and write ups. I shared a few links on Facebook but quickly moved on. I found there was no self-identity wrapped up in the show, no extra validation for having made a splash somewhere for a few minutes. In fact, it had just become a cool thing I did, nothing more.

Suddenly the concept of external measurable accomplishments legitimizing my being had fallen away.

So now while I am forging ahead with all of the same projects, I am entrenched in the process, not the goal. The process is moment based. It’s feeling. It’s a tap into life force with no expectations or dilution into a nebulous and uncertain future. Aligning myself with process is aligning myself with living rather than the permission to do so.

My life is no longer calling for definition and neither am I. I am already defined – defined by my kindness and empathy and the way I choose to live my life every day. My ability to navigate murky emotional waters and connect profoundly to other people, while may not win me an award or notoriety, is how I exist in this world. It’s how I have always been and how I will exit. And I am suddenly ok with that.

The Incomplete Healing Process of Stage IV Cancer

I saw a screening of a beautiful documentary the other day about a young man who, during a remote hike, came across a bear carcass in a barrel. Curious by nature, he poked the bear with his pocket knife only to find the barrel was sitting on a live wire. The man was electrocuted and ultimately lost a hand, parts of his chest and his skull. During a long and arduous recovery, the doctors found evidence of testicular cancer, so he had to undergo chemo on top of having to learn to navigate his life with a new and very changed body.

After the screening,  I approached the young man because what resonated with me was how much gratitude and how much grief was in his story. He had piles of love and people who stayed by his side nursing him back to physical and emotional health. And obviously he had suffered incredible loss. I asked him about his grief process and how he deals with those types of feelings, if and when they come up.

He started to answer, most of his response focusing on the village of love that has gotten him to where he is now. But then he stopped and looked at me. “The thing is,” he said, “It could be worse. I mean, I don’t have cancer anymore.”

He had no idea that the person standing in front of him does have cancer. Not that it would have altered his response although it might have.

It got me thinking about the traumas of stage iv cancer. They are not single or even double life altering events that you get to heal. Healing is rarely complete, rarely whole. Healing is typically just enough until the next trauma comes along. And by trauma, I mean surgery, new treatment, bad test result. Anything that feels like a chipping away at the you you have come to know.

Of course, the real you, the essence that is uniquely yours, can never get taken away by anyone or anything. Not even cancer. But through the physical and emotional struggles with this thing, I am not always clear enough to express my unique essence. I don’t always feel lucid or well. And most of the time I am fighting to heal just enough so my body can handle the next medical obstacle course coming down the pike.

There are those moments of wholeness though, where, despite the daily pain or discomfort, I feel life force energy guiding me along. I can self express and am energized by self connection and connection to others. I try not to harp on the fact that those moments are so fleeting, because they are. I prefer to take them as tiny blessings I can soak up. Of course, I am not always good at doing that, especially with the knowledge of how this works.

Last week, a pre-operative nurse told me to stay positive when I admitted I was nervous about getting brain surgery. Naturally, I wanted to punch her in the nose. Plus I don’t agree that staying positive is the answer to any of my problems.

Stay here, stay aware in the moment, stay authentic, even if it means being a negative whirlwind. Stay open and listen. Because for me, forcing a version of nervous positivity closes me off to hearing things I might really need to hear. Blanket “I’m fines” don’t allow me to see people reaching out to support me. And without that, I am shutting out an opportunity for gratitude. It is in this space where profound healing and presence is available. Gratitude. Where essences brush up against each other.

I have seen this in my own journey as well as in Charged, the documentary I mentioned in the beginning of this post. Absolutely worth a watch. http://www.chargedfilm.com/story/