Thursday, June 4, 2015


When you face deep trauma in your life, I find the experience so dumbfounding, interesting, and utterly unreal. Your body leaps into a protective mode as your mind slowly withdraws from the chaos of the world. It almost feels as though you build a cocoon around yourself as quickly as possible to shield the threat of terror and disaster. Life immediately slows down, for you. But you witness it go forward for everyone else, although you no longer feel a part of it. Every waking moment becomes a hurdle you must get through. One breath at a time. You begin to think, "I made it through one minute, now to get through the next" and so on. Anything beyond one minute just feels like a dream, or maybe even a nightmare.

The only way to get through something is to live it. No matter how difficult or painful that may be, it is most certainly the only way to get to the other side. The past weekend was the absolute worse we have faced in the two years we have endured cancer. My eyes widened to realize the severity of the situation and how there is no going back. So much of our struggle and game-plan faded away as we faced the harsh realities of cancer. Up until now, we've been really fortunate to go from one treatment to the next. As we prepped for chemo, we were forced into an odd in-between state. The meds that once worked so well had stopped working. As the cancer presumably spread, pain and sorrow crept in while we were sleeping and our situation shifted. Although we have a hopeful treatment option in place (I am sitting in the infusion room as we speak) with promising options down the road, the past weekend enlightened me. I shattered with the pain of knowing this may be a glimpse into the future. Our future.

I have not lost hope, but I have always swayed on the side of melancholy. That is just the way my brain functions and my face settles. All my life, strangers have asked, "why are you so sad?" I know I have an innate ability to see and feel pain. I cannot ignore it. I'll break down crying at the grocery store if the mood strikes. I don't know any other way to explain it other than I feel a lot of sadness in the world. I always have. And oftentimes it prevents me from experiencing mundane complacency, a fact that makes me rather jealous frequently. So, please know that I am a fighter, just as Jon has so proven himself to be. And I believe in miracles, maybe even more so than most. I am an optimist at heart, truly. But as we navigate the extreme highs and lows of cancerland, I feel the loneliness of our situation weighing more and more on my heart. For us and for all the millions of people who face a similar path.

Because that is exactly what trauma breeds... loneliness. And isolation. It's a curious matter. Although millions face this terrible disease everyday, and despite the fact that at this very moment I am surrounded by cancer patients being infused with chemotherapy, fighting for their life... I know we all feel alone. Like with Facebook, one day you can get on and feel so comforted by photos of your friends and their babies and pets, so inspired by all they have going on in their life; and the next day, you log in and immediately feel left out and depressed. Sometimes looking at Facebook can be a lonely and isolating act. I find this duality so odd and fascinating. The observer in me is watching as I deal with all things cancer and analyzing how I absorb information and agony. I've only felt like this one other time in my life: when my father died. Once again, I am that child trying to make sense of a senseless world. And I stand in awe of both how beautiful and peculiar it all is. I know this probably makes no sense at all.

So often I hear these words: "I don't know what to say." I think this is the reason so many friends and family members have drifted away through the years. I don't blame them. Of course, I wish I had them in my life, but I know that being my friend comes with a lot of baggage. I can't imagine the burden. So, I'm not surprised when people go on with their life. I don't even understand why someone would read this blog unless they too have cancer in their life. I write this more for my need to write and figure things out, rather than my need for others to read it. Of course, as a writer, I want to be heard. But journaling has become my best friend and councilor. I strongly suggest everyone write, no matter what you're going through. It helps so much. And serves as a great reminder of where you've been.

This blog has gone terribly off track. Shall I focus? Being a caregiver is the most difficult role I will ever have. My only hope is that I can help others by sharing my experience. I am not a full time caregiver. Thankfully, treatment options have made our life very normal up until this point. I am a full time wife to the man I love. I only put on my caregiver hat when I have to. At the worst of times, taking care of someone else is a suicide of the self. One must sacrifice everything, completely, to meet their every need. At the best of times, I have learned more about humanity and vitality than I could ever have imagined. Perhaps I'm doing a terrible job conveying these thoughts, but what I'm trying to say, now that the worse of weekend has passed and hopefully we are over a rough patch (for now), is this: I am okay. I wasn't, at first, but gradually, I became okay. Different from before, but I am okay. And I'm going to be okay. Jon is going to be okay. We are going to be okay.

And here's what I mean by that: We're young and we may not get all the things in life we want or dreamed for, but that's okay. It's okay because I'm learning that life is not about what you want, it's not about being greedy and asking for more. No. Life is about what you are given. Maybe it's not what you wanted, but it is yours. Hold onto it, but don't suffocate it. Accept it. I finally feel, that after all we've been through, I am skimming the surface of acceptance. I am by no means there yet, but I've dipped my toe in the waters and it feels just fine.

Finally, there's been a lot of chatter in the media about how to approach someone going through a traumatic experience. Perhaps you've read Sheryl Sandberg's beautiful essay about the loss of her husband. For those who are interested in helping us and helping others going through devastation (and this is just as much for me when dealing with trauma in other's life), here's a few tips. The optimism is great. Especially in the beginning. The fundraising is incredible! Your generosity has made our life easier and opened up doors for a promising clinical trial as our next treatment option. But in the end, what matters most, is empathy. I truly believe that empathy is the pathway of change. Empathy has the power to move mountains and end wars. No matter your religious or political beliefs, empathy is accessible to us all and one of the least exercised emotions in America. But it is the most necessary. Empathy is simple, profound, and, as someone facing a difficult path, I can say it is so deeply appreciated.

  1. the ability to understand and share the feelings of another.

    "A human being is a part of a whole, called by us "universe", a part limited in time and space. He experiences himself, his thoughts and feelings as something separated from the rest... a kind of optical delusion of his consciousness. This delusion is a kind of prison for us, restricting us to our personal desires and to affection for a few persons nearest to us. Our task must be to free ourselves from this prison by widening our circle of compassion to embrace all living creatures and the whole of nature in its beauty."  Albert Einstein

    With love,


  1. Robyn great to read your post... life documentary. I have been working on a documentary film about my journey with lung cancer going on 6 years.
    Still not sure where to end it.

  2. Hi Kyle! That is absolutely fantastic and a very important endeavor. Jon and I are filmmakers, so we'd love to check out an edit when you have some things cut together. It's very hard to say where to end it... but my gut feeling tells me that you will somehow know when the time is right. Congratulations to you for the project and for being a 6 year survivor! You are my hero! xoxo