Cancer patient translator for the sh*t you say

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There are a lot of articles about what not to say to cancer patients. For the most part I’ve heard everything I’ve come across. There are good explanations as to why not to say these things, and below is my hand at telling everyone what I actually hear when certain remarks are made.

Now this post may be a bit snarky and it comes on the heels of having some empty phrases and promises thrown my way. The truth is my very close friends and family can get away with saying things other people can’t. Because they are willing to connect to what’s going on. They are willing to go to this profound and sometimes dark place with me. The problem is when people pull words that sound like they belong to that profound place but either stay on the surface or even try to travel wholly uninvited to my inner world.

For those of you who don’t have Cancer, I’m sure finding the right words is tricky and uncomfortable. It’s tricky and uncomfortable for me to be going through this. And in some ways, that’s a better place to connect than trying to fix or heal or even allay your own fears about my or your mortality. I know you mean well and, for that, I thank you.

That said, this list may not speak for every Cancer patient out there, but this is what I hear when certain phrases come my way.

1.
When you say
My Sister-in-law (or insert any other relation here) died of Cancer
What I hear: I’m better at word association games than human interaction. In fact, authentic human connection scares me a bit as does not having first hand understanding of profound situations.

2.
When you say
I’m confident you’re going to beat this.
What I hearI don’t know what to say but if I use a powerful word and sentiment, I know I’ll feel better, so you should too.

3.
When you say
We’re going to get through this
NOTE: this is really ok coming from loved ones or people who mean it and are supportive. But recently I’ve heard it from a couple of people I just met.
What I hear when uttered by someone I just metI like being a hero but chances are I will never call you again.

4.
When you say
: I know a guy who can totally cure you and will make some calls right away.
NOTE: generally uttered by the same people in the above camp who like to feel heroic in the moment.
What I hear: I really don’t have the connections I’m talking about and, if I do, I don’t have much time to work my way towards them, although talking to you now really makes me want to want to.

5.
When you say
God has a plan
What I hear: I’m super good at giving people exactly what I need in times of stress. And that’s enough for me. Plus I’m not totally sorry that this wasn’t God’s plan for me.

6.
When you say
You should stop eating meat and dairy. They cause cancer.
What I hear: I take all of my medical advice from Buzzfeed and Facebook. Oh, and I’m really good at getting facts from headlines.
or I’m a staunch believer in holistic medicine but I also believe everyone’s bodies are exactly the same.

7.
When you say
: My Sister-in-law (or insert relation here) had the exact same thing and totally beat it. I’ll find out what she did and let you know.
What I hear: I tend to jump to conclusions about things with very little information. I’m also fairly good at over-promising and under-delivering. If you hound me a lot, I may send you a few links to outdated articles that are probably not relevant.

8.
When you say
: How are you doing????
NOTE: when this is genuine from someone who cares, this is a great question. But my detector is pretty sensitive and, when said with that certain anxiety, it often really means “What’s your prognosis?”
What I hearI’m both fascinated and afraid of death. Mine and yours. So fascinated that this is the overriding emotion here. In fact, you have sort of disappeared. Now how long do you have?

9.
When you say
: Are you OK???? 
NOTE: similar to the above person. Again, when asked without that anxiety, totally fine. But I know the difference.
What I hearI’m not really going to listen to the ins and outs of your tests and progress but I’m doing my part here to support you because you obviously need it.

10.
When you say
I would never do Chemo. What I would do is…
What I hearWhite noise

 

I don’t wish cancer on you, just the perspective it brings

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I am in no way at the end of my soul journey nor have I evolved out of making mistakes or needing to learn. But this sage IV cancer diagnosis has given me a certain perspective I didn’t have before.

I speak to friends who circle life stresses in a way I used to and notice that, not only do I not do that any more, but some of my biggest emotional triggers are just no longer there. Of course, I have bigger fish to fry. Or at least I’m aware of the fish in front of me.

We’re all going to die at some point, but the emotional knowing makes it harder to dwell on things I can’t control. Or better put, it makes it easier to live day by day, moment by moment, building a life I can leave feeling like I gave it my all without getting in my own way.

Of course, I still can be my own obstacle. I’m human. I have depressed bed-ridden days and what’s-the-meaning-of-all-this moments. I struggle with the why-me’s although less than you would think, and mostly around scan result time.

So that said, I decided to recount some of the things that used to weigh on me because I’m often surprised that they have little effect on my daily life anymore. And truthfully, sometimes I’m afraid they are just around the corner, waiting to reincorporate themselves into my world. Although the hope is that if they do crop up, their charge will dissipate almost immediately.

  1. Caring what people think about me – This was a big one. I really really wanted to be liked…by everyone. So much so that I would stress about conversations I’d had and wondered if certain inflections in my voice had made me less likable. These days I’m amazed that after I meet someone, I generally don’t wonder what they’re thinking in relation to me. I figure they’ll let me know by their actions or words. And I’m fine with that.
  2. Taking things personally – As part of the caring what others thought package, I would overanalyze the behavior of others and match it to how they must feel about me. In a sense, I was trying to read minds. So if someone didn’t call, my immediate thought was I had offended them or they didn’t like me. Now I just figure people come, people go. And whoever is there, is meant to be there at that particular moment in time. I also don’t have time to focus on others’ thoughts and have come to the conclusion that I’m not that good at reading minds after all.
  3. Getting (romantically) crazy about people before I know them – I used to get attached to men easily and super fast. In fact, I would do that with friends as well. And I would obsess about when they were going to call, if they were going to call. These days I get less attached to people out of the gate. Somewhere along the line I decided I don’t need to get attached unless you give me a good reason to do so. And that reason takes time to show itself. This one is particularly surprising as I date, because if a man, even one I really like, doesn’t call, I’m unphased. Not cut off, not numb, but not all that affected. Maybe it rolls into the idea of not taking things personally. Because if someone doesn’t know me, how can their lack of interest be personal? And if on some level it is personal, good to know sooner rather than later.
  4. Spending time in places or with people who don’t make me feel good – I’ve been in many situations that are the picture of fun, or with people who are the epitome of cool. And in the past, I was concerned with trying to change my inner world in that moment to make it match what was going on outside. So a “fun” party that I was not enjoying would become an exercise in morphing my emotional life, usually with little success. I’d come away from those moments feeling alien or, at worst, really bad about myself. Now, I just don’t bother. When I show up somewhere or meet someone, I listen for my inner voice to guide me. And I’ve learned there’s a difference between pushing yourself to exist outside of your comfort zone (good) and compromising your own sense of self and comfort (bad).
  5. Falling victim to my own choices –  There’s a saying that with one foot in the past and one in the future, you are just peeing on the present. I never had much of a problem futuring (which is another topic all together) but I tended to live in the past. Or lived in the present regretting the past. “If only I had committed to my writing sooner” or “if only I had kept in touch with so and so.” I’ve recently come to an acceptance of what is and that I am where I am based on all the choices I made. They were mine, good or bad and regretting any of them doesn’t improve today. While it’s important to learn from the past and my mistakes, it’s also crucial for me not to live there. Because all we really have is now.

Separating my mind from my cancer

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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.

Romancing my self

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Since my double mastectomy in 2011, I’ve had this obsession with shopping for lingerie online. I wrote about how much I love my new boobs here. And I really do. They feel more like mine than my old ones. And when I’m down or the guest of honor at my own pity party, I wind up online looking at bras and panties. Actually I tend to do it no matter how I feel, but more so when I need a pick me up.

I’ve gotten great at finding sales (Barneys Warehouse is one of my favorite places to go) and there is nothing like getting a matching bra and panty set to make me feel beautiful and frisky and to elevate my mood.

I chalk up these purchases as acts of self love. Ways to pamper myself and remind myself of the femininity that came into question early on in treatment. This was something that was important for me to find again. My body had changed in so many ways. Aside from the obvious loss, I prematurely lost my period, I lost my ability to have children. There was noting gradual about this. It was all of a sudden. And the question was how do I find my womanhood in the context of such a dramatic shift of self?

For me one of the tools is this new joy of lingerie. Every little package is like a love letter to my body. A way of saying I deserve to continue feeling like a sexual being. I deserve to feel pretty. And for that I am grateful.

What I find as I navigate this whole experience is that the more I am able to focus on gratitude and joy, even in things that seem as trivial as underwear, the better the journey is. Every time I look for something pretty to wear, I am shifting the focus from loss to gain. The gaining of a new sense of self, of self confidence and of a little bit of joy that helps get me through that moment.

There are certainly less material tools out there to find acceptance in the now, but I wanted to share this one. I often hear people deny their sexual selves after treatment and I can imagine that some may also deny themselves material pleasures. I wanted to weigh in to say there’s nothing wrong with wanting to feel sexy post surgery and there’s nothing wrong with a little retail therapy now and again. Especially if it helps you romance your new self.