Honest statement of the day

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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/

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.

The Anger Crutch

I’ve taken a mini hiatus from blog writing and social media for two reasons. One, treatment struck again. But two, mostly because I was angry and reacting to my situation.

For treatment, I went through some more rounds of radiation. I also had a scan and found out I have a new lesion in my skull. The good news is that my organs are still cancer free. But really, fuck good news. Or at least, that’s how I’ve been feeling.

The only thing worse than being angry and not being able to get out of that tornado is not wanting to. I found myself holding onto anger like a life preserver that, in the end, only promised to drown me or, at least, make me miserable.

Stage IV cancer is the embodiment of powerlessness. From new mets to hair loss to runaway side effects from treatment. The only control I have is with my attitude or how I choose to come to the world. For the past month I chose anger as the emotion to tether me to a sense of purpose in an otherwise meaningless landscape.

Of course, anger as an anchor into anything worthwhile is an illusion. I knew that when I was in it but it was the only thing that made me feel powerful in the moment.

I don’t recommend staying there too long because, from that place, people get pushed away and internalization of that emotion can lead to depression and inactivity: all things that stand in the way of tapping into real life purpose.

I will thank anger for showing up though. It was a shitty crutch (that I’m sure will be back at some point). But it was one that gave me perspective about my relationship to this emotion. My reasons for holding on to it when I do. Now, being mostly on the other side, I am reminded that things always move and change. I am also grateful to have had access to this feeling, because it is entirely human and part of this crazy life experience. It means I’m still alive.