Reminder to self

I try to focus on gratitude for every day I get to experience, for the massive amounts of love in my life, for having options outside of just fading away from this disease. But right now I’m angry. Angry and depleted.

The darkest thing I can admit during times like these is that there are moments I have fantasies of being killed by a stray bullet or an intruder. Of course, I don’t really wish for that but it feels just as senseless and quicker than whatever I am going through.

I’m heading into another round of chemo tomorrow and every fiber of my being is resistant. It’s difficult to undergo what seems like barbaric measures to rid myself of this disease without any guarantee regarding its efficacy. The last chemo cocktail I was on seemed to only give me a host of uncomfortable side effects without de-bulking my bone mets. In fact there was a slight progression. Although who’s to say it didn’t keep the cancer from spreading to my lymph nodes or organs. I choose to believe it did something since the thought of getting knocked down for no reason is unbearable.

The truth is I’m resigned to a roller coaster life – hopefully wth some large breaks from treatment in between – but the acceptance of it doesn’t make it any easier or less exhausting. I see people expire from this disease on a regular basis and it’s been a challenge for me to remember that, while we are on similar paths, theirs are not mine. So matching up their diagnosis dates with mine and comparing their treatment paths with what I’ve gone through, gets me no closer to figuring out when my last breath will be.

So I put this post here to remind myself to stay moment-based. To say I will forge ahead. I will continue to find joy in my days. I will focus on love and life experiences and self expression. I will try to trust this process and during the moments I don’t, I will let myself cry and be afraid, knowing that that too will pass.

We’re all headed to the same place


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


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.

Grief and the breast cancer diagnosis


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


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.

From Eastern vs. Western to Eastern and Western


Prior to my 2011 diagnosis, I spent considerable time futzing with doctors who said I was fine and steered me away from the mammogram. The first visit was in 2005 to my OBGYN, who felt the pea sized mass I was worried about. He told me I was too young to have breast cancer and I was fine (I was 33 at the time).

I’d like to say all of this is his fault because my life would probably be different had I caught everything that early. But the truth is I walked around afraid of Western medicine for a long time. I looked for healers and doctors who also shied away from traditional modalities or who supported my intentional blindness to what was to come.

Even so, from most of those practitioners (minus the lousy OBGYN), I learned how to connect to my body in a different way. Through Ayurveda, I learned how to eat for the seasons, and for my body type. From Chiropractic, I was able to tap into certain muscle groups and improve my gait. My workout regimen got better. Actually I embarked on a workout regimen at all. Acupuncture helped with stress management.

So while I walked into this journey late for the party and terrified of traditional medicine, I did have the sense that my body and I were a team. Something I might not have felt in 2005. This doesn’t mean I’m happy it took an extra 6 years to get diagnosed. Or that there aren’t times when I want to give up, drop this body because of the pain. But it does mean that I now know the difference between diagnostics and support. It also means that I am conscientiously throwing everything at this disease with the hope that something will work. Stay tuned for the results…

Not living life to avoid death?


I always thought that when someone got hit with a terminal illness or had a near death experience, they were catapulted into another gear. The epiphany was “life is short” so they’ll go after their passions with every fiber of their beings to make a mark.

So far this has not been my experience. I am tired rather than driven. The physical fatigue makes sense, sure, but I actually feel blocked from identifying my passion. Blocked from tapping into a life force energy that is always there for anyone to access.

This has brought me to the realization that somehow I equate achievement of life purpose, completion of life goal with completion of life. And I am not ready to die. Admittedly, this is a highly flawed belief pattern and assumes a singular life goal, ignoring the journey all together. So while I’m busy avoiding my passions (and death to some degree), I don’t get to revel in the moments that actually make up the life I choose to live.

Therefore I am writing this blog. To ward of moments of stagnation. To share things like this that plague me with the hope that getting them out of my head will allow me to move on from this loop that only ails my search for meaning…

Afraid to be sick / afraid to not be sick


I don’t like being sick. Not a fan of hospitals. While grateful for the love of support of people around me, I don’t like the kind of attention that comes with illness. I especially don’t like being physically compromised or limited. From not being able to go skydiving to having pain when I get out of bed or walk to the bathroom is not the way I consciously choose to navigate this existence…

What I do like though is the permission to not make commitments. To not have to spend time with people that don’t nourish or inspire me. I like that I have found the mindset to follow only the things in life that interest me. Of course, none of this is really connected to being terminal. Everyone has these rights. We all have the permission to follow our dreams, whatever they may be, and not waste the majority of our time waiting for the sand to run through the hourglass. I have always believed this but I act on it now. If I got better, would I continue to live my life for me?