stage IV breast cancer
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.
- 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.
- 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.
- 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.
- 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.
- 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.
Honest statement of the day
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.
Honest statement of the day
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.
Honest statement of the day
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/
Honest statement of the day
Open letter to the OBGYN who waved off my tiny lump
Dear Dr. G.:
It has been 12 years since that day in your office, when you dismissed a pea sized lump in my right breast. Before I spoil what became of that lump, I am going to back track a bit.
I was one of your first patients, when you started your practice in Beverly Hills about 17 years ago. You were eager and excited about helping women through child birth and whatever other issues they presented. You were a fantastic ear and a good doctor.
I left Los Angeles shortly after establishing a rapport with you and returned a few years later, in 2005, because I had gotten engaged to a man who had remained in California. Most of my prior support system was no longer here, I was having some issues with painful sex and I had a lump in my breast. So I made an appointment to see you.
This is a day I will never forget. I walked into your office feeling afraid and alone, really hoping to see the doctor I had known so many years before. But you were not there. Or at least your warmth wasn’t. You treated my visit much like an encounter at a cocktail party, almost looking over my shoulder to see if there was someone better to talk to, even though we were the only two people in the exam room.
I told you about discomfort with sex and you asked me if I really loved my fiancé. When I said I did, you mentioned another patient who had had a similar problem and, it turned out, wasn’t in love with her partner. I then told you about a lump that was concerning. It was small, it was hard, it was nothing you said after kneading around it for a minute. Plus, you said, I was way too young to worry about something like breast cancer. I was 33. After that you rushed through the rest of the exam and had me meet you in your office once I got dressed. This was the fun part. We could shoot the shit and you could introduce me to your next patient who was tangentially related to the entertainment industry. It was amazing how far you had come.
What wasn’t amazing was the way I felt when I walked out of your office. I was confused, insecure and not less anxious than when I had arrived. I can’t fault you for not offering the same kind of support or comfort as our past visits. Your bedside manner had changed. And, in my opinion, not for the better. But that was the doctor you had chosen to become. I can, however, fault you for carelessness. For using your fingers and opinions as a diagnostic test. What would it have hurt to have ordered a mammogram back then?
I went through years hearing your words in my head – that it was nothing – even as the lump grew. I was meek, I was afraid to assert myself and truthfully, I probably didn’t want to know it was something. Until another lump appeared under my arm. That was 5 years later. I was almost 38. And you guessed it, it was cancer. It was in my breast and had spread to my lymph nodes.
I was resentful at you back then but, rather than look backwards, I chose to put one foot in front of the other with chemo and surgery and radiation and surgery again and hormone therapy. Through all of that I learned to be my own advocate, something I didn’t know how to do when I saw you back in 2005. I learned how to do research, get second opinions, ask for tests I thought were necessary even if they weren’t readily recommended. And for all of that I thanked you in a weird way. It was a hard lesson. A terrible lesson but I swore never to put my health and wellbeing squarely in someone else’s hands again.
I was upset that maybe I could have escaped with a lumpectomy and medication instead of the barrage of treatments I had to undergo. But I was willing to let all of that be the past. Until summer of 2015, when the cancer returned: in my bones, my liver and my brain.
So now, Dr. G., I am a stage IV breast cancer patient. Do I know that I wouldn’t have gotten here if you had ordered a mammogram on that day in 2005? No. I know there is no guarantee but my odds would have been better. My chances of living a cancer free life would have been much higher. So I am writing this letter to let you know this.
The lesser part of me wishes you would stop practicing. The lesser part of me is calling you out on your arrogance and ignorance. I sent a lot of patients your way, most of who ultimately left you because of their own experiences with you. Some of those experiences were fatal. The lesser part of me feels better for pointing that out.
The better part of me wishes you well. It hopes that you move forward more responsibly. That you take my story and the story of others you have affected to become a better doctor. You are in a position of power and I hope you recognize that. Not just with your ability to diagnose and write prescriptions but with your words as an expert and someone people look to and trust.
I do hope that somehow this reaches you. I hope that you think of me every time someone comes in with a breast abnormality and every time you write a prescription for a mammogram. I also hope you are writing those often. That very small action, that scribble on a pad of paper could have changed the trajectory of my life. While I missed out on that opportunity, please do give that to the women who come to you for guidance and care. You can’t do anything to make this right, but that would surely help.
All the best.