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.

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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.

We’re all headed to the same place

white-flowers

I don’t generally get sentimental about death. When someone dies, I see it as their last stop on the train in whatever body they arrived in. And I don’t believe they fully disappear. In fact, I think they reenter a big pool of oneness, that births us all, only to reemerge in myriad ways I won’t even pretend to know.

But this week has been different…

I met a woman at a party a year and a half ago. She was around my age, vibrant, smart, filled with purpose. She and I not only found we had a breast cancer diagnosis in common, but we shared an oncologist.

While I go about this journey quietly, she lived it out loud. But not as a victim. As something of a sherpa to those who would come after her in this dodgy terrain called cancer. And while I find empowerment in silence, she found it in positive broadcasting and even went as far as to make a documentary about her journey. It provided answers she had been looking for and was unable to find at the beginning of her diagnosis.

So we bonded over our commonalities and became Facebook friends, as you do. I never kept in touch and rarely saw her posts. But she was in my peripheral radar. Until this week…when I saw a post announcing she had passed away.

And this time, this death has been so utterly impossible for me to process. It’s not because she was taken by the disease that I have. It’s not because of our similar age or the doctors we shared. But it’s because she was doing and living and looking mighty damn healthy up until the end. Many of her Facebook friends even said they had no idea she was sick again.

So why would that hit a nerve? Well I pride myself in looking healthy and in doing and in living every day to its fullest. And I have believed it to be something of an antidote to this disease. As if living fully will, in part, make the cancer go away. It will signal to the Universe that I’m really ok to stick around for a bit.

But if it didn’t work for her, why will it work for me?

That may sound selfish. It may sound naive – I mean, everyone is different. And as I said in the beginning, we are all headed to the same point. When that will occur, no one knows. But her death strikes a chord of terror. It makes me feel like this thing may very well take me and what if it takes me before I realize myself or do what I feel I am meant to do?

And that’s where this woman’s story is actually an inspiration. AW Gryphon touched oh so many people. She was a light in this world. You didn’t need to talk to her for more than 10 minutes to know that. She said a lot in a short amount of time. She seemed to harness the air around her and fly towards purpose and meaning and authentic messaging that helped droves of people.

So while this death is still a difficult one for me to wrap my head around, I am going to choose to focus more on the life that was realized here. Because that’s worth celebrating.

Separating my mind from my cancer

ranch

This week I have been hit with some less than stellar news – the cancer in my bone is progressing and my tumor markers are elevated, which may mean that my treatment is no longer working. And only after about 7 months.

Aside from the obvious fear all of this brings about, I find myself facing yet another challenge. And that is mentally separating the cancer in me from that which IS me.

In some ways, this hits my core belief that everything happens for a reason and if you do what you’re meant to do, everything will be ok. There are people out there who think cancer is a spiritual disease, or who feel this was brought on by the person hosting it. I always believed that too on some level. And I have been working really hard with my diet, my spiritual practice, my exercise, my supplemental health modalities…everything someone can do to tell the Universe this is no longer needed.

And the tests are still moving in a non-optimal direction…

So where does this leave me?  I am at a point where I think I have to let go of this personalization of a disease that may actually be unfair and random.

But here is where it gets tricky for me…I started this journey with my eyes open, conscious of not falling too far down the victim rabbit hole. In fact, with this diagnosis, I have been brought into my body, a body I tried to escape as a younger woman, because of an abuse history and low self esteem. I have allowed myself to feel alive in a different way, to embrace life and achieve a self connection I avoided for a long time. I’m not going to say this is the “gift of cancer” because I’m not sure I believe that. But it is the gift of my reaction to this unfortunate bump in the road. And cancer is an obstacle I was given perhaps so I could gain perspective.

So on some level I feel inextricably linked to these stupid cells (as my therapist calls them). It’s as if together we are doing a life purpose/karmic dance together. Our paths are intertwined.

But as I go through the ups and downs of results, this seems faulty. It seems like I should be able to look at the cancer cells and realize they are just cells. They are in me but they are not me. As someone who has worked so hard to find her way into her body, it’s a scary exercise to try to separate any part of me from myself. I worked so hard to integrate and now it almost feels like I have to go backwards and stay integrated in self while realizing that there is something in me that I don’t need to connect to, that doesn’t help me self identify. This also means that I have to admit I am not in complete control of this situation and I do not like the thought of that.

So what can I control as I sort out this new challenge?

As a dear Twitter friend said the other day when I was taking my new developments personally and wondering why my brilliant outlook wasn’t affecting my health: “positive attitude has to do with how we live our days, not what scan results say.” And so I get to continue to control where I put my focus. On my days, not on my scan results. Of course, I need to move forward prudently based on what the results say. But I get to identify my days and life experience with my positive attitude, the friends I have, the love I give and feel and the creativity I express. I am hoping to get some resolve as far as the why of this whole thing goes, but I would be equally happy finding a resolution in no longer needing to understand it.

Knowing about the unknown

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I try not to look at statistics or prognoses. According to what I’ve read, I don’t have much time. But I’m young, healthy (considering) and always looking to improve, both myself and my condition. Everyone is different and none of us knows how long we have to live. There’s always that proverbial bus that could hit us any minute.

With this stage IV stuff, there is a constant awareness of the unknown. It’s an unknown that’s a part of everyone’s lives although I wasn’t particularly aware of it pre-diagnosis. The idea of mortality or even being confronted with it was a vague idea that happened to old people and relatives of friends.

There’s something about my ignorant meandering that I miss. That’s not to say I was happy wandering through life with no concept of its finality. Because I wasn’t. I struggled for a long time with finding my voice, finding a sense of belonging. Wondering where is my corner of the world. But there was a kind of haze over things that made existence a directionless dream for me. I didn’t know it then, but I do now.

Once I knew this feeling, the feeling that not just life, but MY life, was finite, I couldn’t unknow it. And when I say know, I don’t mean intellectual knowing. It’s a to-the-core kind of knowing that changed my emotional DNA.

Looking at how I lived my life before, it’s sad to say that there is a Universal push in this diagnosis that was much needed. It’s really too bad that it took something as big as this to give me perspective and an innate sense of structure that I had trouble attaining. I can feel the finish line even though I don’t know where I am in the race and have found a new drive to run as best as I can.

While I am not grateful for cancer or even the “gifts” it brings, I am grateful that I can recognize its lessons. Now my hope is that as a cast sets a bone, this diagnosis will set a new drive in place so that when I am cancer free (and I plan to be), I can continue to operate with this energy and bring it to everything I do.

Grief and the breast cancer diagnosis

carrots

I am starting to hit acceptance with all of this. It has been a few months of struggling to accept my path and each emotion along the way has corresponded pretty closely to the stages of grief. (I touch on that a bit in this post)

This diagnosis has felt like such a loss. Loss of how I saw my life – I had imagined having kids or even having forever to figure out what I wanted to do. Loss of parts of my body – my breasts for one and several lymph nodes. But I think there was also a profound loss of self in all of this.

I was on a path, figuring out the things that made me feel connected to myself and the rest of the world. I had forged an amazing relationship to exercise and found ways to stay grounded, both physically and spiritually. I ate well, always gravitated towards self improvement and saw myself as exceptionally healthy. And then in an instant, all of that got taken away.

I could no longer work out because the bone mets hurt almost immediately. Every waking moment was spent focusing on next steps. And I wasn’t the picture of health I had envisioned. There I was: derailed, knocked off course and the tools once used to stabilize my mood or get in touch with myself were no longer available.

I still experience the emotional palette related to grief. Some days are worse than others. But I am grateful to also be experiencing acceptance and hope alongside all of that. I think this hope is coming, in part, from feeling like I have something to say about all of this. And with that, a striving for meaning, in my diagnosis, in life has begun to form.

Finding my voice

coffee

I went to a conference today and had to leave after an hour of trying to stay cheerful and upright. It was nice to be around people but the hot flashes, combined with the post surgery pain and whatever aches I feel from my medication was enough to make me call it early. I also have a vocal cord issue because of everything which makes it hard to speak. Which, after all is said and done, is the real reason it’s hard to be in group of people.

The lost voice – which is from cancer growth pushing up against the nerve that enervates the voice box – is probably the hardest thing to deal with. It’s been horse to completely gone for over 5 months. And it’s something I can’t hide. It’s also something I have to wait to address.

What makes it so difficult to bear is that it’s almost a metaphor for a lifelong struggle: finding my voice. This voice I’ve been looking for in my writing, in my career, my relationship. I talked about my issues with following my bliss here. So for that reason it’s been tough to be consistent enough to hone in on a creative voice. In my primary relationship I find it hard to speak up for myself sometimes (although in other relationships I don’t seem to have that problem).

The purpose of this blog is to spill. To say things that are stuck in my head. It’s as weird to think that people will read my thoughts as it is to think that no one will read them. Finding a voice is great but if no one is listening then it’s like that tree that falls alone in the forest. Which, again, is a big reason I left the conference yesterday. Because, even in a forest filled with trees, I felt like the one tree that made no noise as the wind circled my leaves. And I don’t want to be a lonely tree.