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.
- 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.
- 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.
- 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.
- 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).
- 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.
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.
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.
Leaving the security of a long marriage has recast me into the land of the single people. And I have already stuck my toe in the dating pool. It’s a good way to keep busy, meet new people, figure out what kind of person I want to be with, if any. I also have this drive to live and fit in all the things I’ve ever wanted to do into a short period of time. Because who knows when the last grain of sand will make it through my hour glass.
Needless, to say, it’s been wonderful but exhausting.
I’ve gone on a few dates and the question always comes up about when do I mention my situation. I tend to be an honest person and so when I get questions about my restrictive diet or the fact that I have a handicapped placard, I’m inclined to answer with the truth. And I did that on two occasions.
The first time, the response was great. I was out with someone much like me who cuts to the chase and tends to be very straight forward. I wound up in a matter-of-fact conversation that had a nice give and take.
The second time was last night. Things got physical, one thing led to another and before I knew it he was asking me about my hip surgery. I’m not a terrific liar so I told him what was going on. I included an out, saying I knew this was a bit much but his response was that he wasn’t going anywhere. He even offered to take me to my scan next week. I was a little surprised but pleasantly so.
And then fast forward a day and he has disappeared. In many ways I don’t blame him. I don’t even want to take this stuff on so I can’t imagine someone else wanting to get involved with it all. But I am also terribly hurt. I am also angry. Angry at myself.
Having someone tell me they won’t go anywhere, no matter how unrealistic and silly that is to say on a first date, touched a very deep button for me. And I let that sink in. I let myself and my body believe it.
In a way, I feel like I let myself down and didn’t protect me the way I should have. And now someone I liked is gone. But of course the hurt from his absence has more to do with my voids than with him because I don’t know him at all.
It does make me nervous about my man picker. It makes me wish there were a formula for divulging the cancer thing with dating. But I know there really isn’t one. It also makes me angry that I have to deal with this at all. This is something most people don’t have hiding in their back pockets. And the risk of pulling it out too late is that someone will feel duped. The risk of mentioning it too early is abandonment.
But maybe on some level the Universe is taking care of me. If last night’s guy pushed such a button so early on, he probably wasn’t the healthiest choice for me.
So while I’m a little down, I’m resilient. I already feel a bit better having written about it. And I am going to continue taking the dating and cancer equation on a case by case basis. I am going to listen to my gut about when to mention it and trust that the right person or people wont disappear. As for the ones that do go away, I will just choose to believe they’ve done me a great service.
I left my husband today. I chose to do it for my health. We were together for 13 years.
I’ve written this post over and over. Cataloging the ins and out of what my husband and I did to get here. Trying to be honest about my part in everything. But as I think about what I want to say, I realize the details aren’t the point.
Sure it takes two to make or break a marriage. It’s technically sad when a union of 13 years dissolves. Things that look good on the outside are not always that way on the inside…I could go on…but I won’t. At least, not in this direction.
The truth is, without this diagnosis I probably would have stayed, continued to try to make things work. Because there is a lot of love there. But there is also a lot of stress. And a stressful environment is not a good one when battling cancer.
Part of the stress came from my husband’s controlling behavior and the other part came from my shutting down. What I’ve come to realize in the last few months is that to navigate all of this, I can’t be shut down. I really have to come to this eyes open, present, an active participant in the life I get to build. A life that I now know to be limited in time.
It is this real knowing of the finite nature of life that has pushed me to seek joy. Nurture self expression that I couldn’t find in the context of my marriage. It’s allowing me to stop second guessing that voice that has been telling me I’m unhappy. Because even though there were good times, I never quite felt reflected in my surroundings. It was like I was renting space in someone else’s world. And it’s time to live in mine.
Sure there are moments I’m scared. Scared of being alone. Scared of losing love. But I also have moments of great faith and trusting the Universe to provide exactly what I need. So today I’m leaping because, even thought the fall might suck, there will be a net. And because if I get to keep and cultivate myself with love, I have nothing else to lose.
Since my rediagnosis back in August, I have had this uncanny ability to rout out all of the stories about women who are around my age who are passing away from stage IV breast cancer. I normally try to dig a bit, google their names to find out what kind of cancer it was (hormone positive? triple negative?), when they got diagnosed, what kind of treatment they underwent…Then I do the math and see, based on their timeline, how much time I have left.
Helpful. I know.
One of the most difficult parts of stage IV breast cancer is that there is so much they do not know. Nobody knows if your treatment will work. Nobody really knows how much time you have. They could give you a ballpark but many people have been told 6 months and have gone on to live for over 18 years. And the opposite is true. Nobody can tell you where the cancer will hit next. Or, in my case, if the chronic cough I have is really related to the fluid around my lungs or something else. The list of unknowns goes on.
It would be so nice to get some absolutes in a way. But even the absolutes they have via scientific data are not so absolute. Because everybody is different. And while a study can give you the general sense of efficacy for a drug, or its side effects, nobody knows how YOUR body will fare on that drug.
It turns out this useless search for absolutes is really my search for comfort in something otherwise so uncomfortable. If I know the parameters or what to expect, I can exhale. But if I really knew how much time I had left or where and when the cancer would spread next, would that truly allow me to breathe freely?
So I’ve starting seeking comfort in others ways. I’ve been connecting with people who are going through similar things. I find that while their exact health journey may be different than mine, the feelings we share are generally the same. Or the side effects they are experiencing may be the ones I have, and how nice it is to be able to bitch about premature menopause with someone who gets it.
I’m also looking to give up trying to forecast my own timeline. Being in the present is the only real comfort there is. Because, ultimately, all I really have is now, same as anyone, healthy or not.