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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Not enough…

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It seems like every time I’m about to make a giant leap forward in my life, I undergo a health setback. Things were fine and dandy over the summer and I got busy planning. But this stage IV diagnosis made short work of any goals I’d set.

I try to remain positive about this journey. It’s the only way to really fight this thing. But today, I am sick in bed with a fever, staring at the guest room walls, wondering if I will ever leave this room.

Almost certainly I will. At least, this time…

Today, I had been taking more steps towards creating a life I am proud of when this fever cropped up. My white blood count is low (1.9), my throat is on fire and I am back on antibiotics. Thank god for those! But physically I feel like crap…

Emotionally I don’t feel well either. This pattern of moving forward and then getting pushed back is like the Universe’s telling me I am not enough. That my dreams are not worth following or I am not trustworthy enough to make my own decisions.

That sense of not being enough is an echo from childhood. I briefly talked about physical abuse here. And that is only part of what recorded the “not enough” tape. Never mind the details, but what it did was make me someone who tried so hard to please others at a great cost to myself.

So it seems unfair that the moment I feel the fire to push towards something for me, I get shut down. Or at least, that’s how it feels. This diagnosis made me realize I need to please myself and when it becomes difficult to do that, I lose steam and a bit of hope.

Writing this, I wonder if maybe there are other ways to meet myself and my desires outside of those plans I’ve been trying to make. This blog has helped. It puts labels on things otherwise vague and terrifying. And that’s for me…It’s for you too, whoever reads this, because isn’t it nice to know, even though we navigate this existence alone, we are all one in this thing called the human condition?

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.

Flirting with IVF

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Back when I was flirting with IVF, I remember sitting in the waiting room of the fertility office. It was cold and sterile, at least is in my memory. And as I sat there I felt like I had failed as a woman. I was as cold and sterile as the chair I was sitting in.

To make matters worse, the fertility doctor had a giant portrait of his family (wife and two kids) hanging in his office. Now when I say giant, think big and then multiply it about 20 times. They were not there to represent an IVF success story, it was just the doctor’s aesthetic. Their little eyes (giant only because of the size of the picture) looked at me as if to say “you couldn’t do this.”

Needless to say, my IVF journey was short lived for many reasons. I wasn’t that fertile anymore due to chemo, plus taking hormones would have introduced too much risk to my health. But what stood out for me most was the sense that I was no longer a real woman. It was a primal loss of desirability.

To get to the other side I had to grieve my ability to have a biological child. I also had to address my sexuality. Take a look at what made me feel desirable and tap into a part of myself that was all too easy to ignore…until it wasn’t.

I found creative tools to do that – from sexy selfies to flirting with strangers online – the details of which I will share at some point. There was a lot of going from the outside in. Focusing on the external to get to the internal. I had to overcome judgements of vanity and admit that I wanted to be attractive not just to myself but to other people. And as I gained that confidence, the confidence that other people saw me as desirable, it became less important for me to seek that kind of attention. Addressing it head on got it off my plate so I could focus on other things.

Don’t get me wrong, I still struggle with aging and have not completely let go of my desire to be attractive. But it’s not the most prominent issue I deal with anymore. My guess is it’s because I honored it and gave it a voice. When stuffing it would have only made it worse.

As far as IVF goes, I’m glad I stepped away from pursuing that. I applaud anyone who goes down that path. It’s a beautiful thing, creating life. And for those of us who can’t do it in that way, we get to find other ways to create.

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.

Sometimes I don’t want to be girlfriends…or do I?

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A funny thing happened on the way to stage IV. Back in 2011, when I was dealing with a fairly contained case of the breast cancer (minus, of course, infected lymph nodes and a larger than comfortable mass), I faced that challenge as if it were a limited period of time, after which cancer would be in my rear view mirror…permanently.

The Universe had other plans though and now I am chronic. I won’t say terminal although I think about it that way sometimes (Probably best to shift that mindset eventually).

When everything started, I resisted support groups – actually I went to a couple and never went back. I turned away opportunities to talk about what was going on…when I was bald, a woman came up to me at a Starbucks, and asked about treatment. Granted it was not the most appropriate way to approach a stranger but, looking back, she was probably trying to forge sisterhood with someone who understood.

In those days, talking about cancer with people who had cancer was not uplifting. Every time I connected with someone who was going through something similar, it felt like I was connecting with the disease. And, my God, I wanted to be normal.

Now I feel less normal or, at least, like I have to shift my concept of normal. I used to forget I had cancer for long stretches of time and now it’s most of what I think about. My guess is I’m still in shock. It’s been 6 months since I found out about the recurrence and I’ve been surfing the waves of grief for all that time, hitting everything from denial, anger, bargaining, depression…so now I’m ready for a little acceptance. The hope is that writing this blog will assist in that shift.

EverythingLeadsToThis already symbolizes a significant change from the first time around…I’m writing about cancer and my experience. I’m talking about this thing I didn’t want to talk about, which means I am now open to finding a sense of community. In fact, it’s something I’d like to find. And as much as I don’t want to want that, there it is.

From Eastern vs. Western to Eastern and Western

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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…