The Incomplete Healing Process of Stage IV Cancer

I saw a screening of a beautiful documentary the other day about a young man who, during a remote hike, came across a bear carcass in a barrel. Curious by nature, he poked the bear with his pocket knife only to find the barrel was sitting on a live wire. The man was electrocuted and ultimately lost a hand, parts of his chest and his skull. During a long and arduous recovery, the doctors found evidence of testicular cancer, so he had to undergo chemo on top of having to learn to navigate his life with a new and very changed body.

After the screening,  I approached the young man because what resonated with me was how much gratitude and how much grief was in his story. He had piles of love and people who stayed by his side nursing him back to physical and emotional health. And obviously he had suffered incredible loss. I asked him about his grief process and how he deals with those types of feelings, if and when they come up.

He started to answer, most of his response focusing on the village of love that has gotten him to where he is now. But then he stopped and looked at me. “The thing is,” he said, “It could be worse. I mean, I don’t have cancer anymore.”

He had no idea that the person standing in front of him does have cancer. Not that it would have altered his response although it might have.

It got me thinking about the traumas of stage iv cancer. They are not single or even double life altering events that you get to heal. Healing is rarely complete, rarely whole. Healing is typically just enough until the next trauma comes along. And by trauma, I mean surgery, new treatment, bad test result. Anything that feels like a chipping away at the you you have come to know.

Of course, the real you, the essence that is uniquely yours, can never get taken away by anyone or anything. Not even cancer. But through the physical and emotional struggles with this thing, I am not always clear enough to express my unique essence. I don’t always feel lucid or well. And most of the time I am fighting to heal just enough so my body can handle the next medical obstacle course coming down the pike.

There are those moments of wholeness though, where, despite the daily pain or discomfort, I feel life force energy guiding me along. I can self express and am energized by self connection and connection to others. I try not to harp on the fact that those moments are so fleeting, because they are. I prefer to take them as tiny blessings I can soak up. Of course, I am not always good at doing that, especially with the knowledge of how this works.

Last week, a pre-operative nurse told me to stay positive when I admitted I was nervous about getting brain surgery. Naturally, I wanted to punch her in the nose. Plus I don’t agree that staying positive is the answer to any of my problems.

Stay here, stay aware in the moment, stay authentic, even if it means being a negative whirlwind. Stay open and listen. Because for me, forcing a version of nervous positivity closes me off to hearing things I might really need to hear. Blanket “I’m fines” don’t allow me to see people reaching out to support me. And without that, I am shutting out an opportunity for gratitude. It is in this space where profound healing and presence is available. Gratitude. Where essences brush up against each other.

I have seen this in my own journey as well as in Charged, the documentary I mentioned in the beginning of this post. Absolutely worth a watch. http://www.chargedfilm.com/story/

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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.

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.

Cancer is crazy…I’m not?

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My emotions since re-diagnosis have been all over the place. I’ve hit every stage of grief, had moments of hope, been excited about turning my life into something I’m happy with, gone back to grieving, hope, excitement….and it goes on. A virtual carousel of crazy.

As someone who has dealt with depression for most of my life, I am no stranger to the dark side. I’ve dipped my toe in that water many times and then rebounded to the light side until I went back to the dark over and over.

It’s taken years of soul searching and willingness to be able to settle into gratitude and acceptance. To find compassion for myself and others. I’m not perfect at it and some days are better than others, but I’ve come miles from where I started.

Cancer is a messy ordeal and the emotions that come with it are too. It can be depleting on so many levels. And there are times when I am afraid that if the feelings are crazy, then so am I. I’m afraid because I don’t want to go back to that scattered, very sad and lost person I was.

But feeling scattered, sad and lost is different than actually embodying those things. And I know that. Intellectually. There is that scared little person inside of me though, along with the bigger person I’ve become, that is afraid of returning to the all encompassing dark side. It’s a feeling of dread.

So what I have to do during the dreadful moments is to focus on just that moment. And remind myself that for today I am navigating this the best way I can and that crazy is just the ride I’m on.

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

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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.

Afraid to be sick / afraid to not be sick

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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?