It’s been over three years since I was diagnosed with metastatic breast cancer, and I finally feel like I’ve reached a new phase of my healing.
That diagnosis will fuck with you. I have friends now who have dealt with cancer, but Stage 4 is something else, and we are much fewer. I tried a Facebook group for women living with metastatic breast cancer, but the overall vibe of the place is, “This is where we come to die together.” Like an elephant graveyard, you know, where they go purposefully because they know their demise is imminent.
I don’t want that energy in my life. I’m not working on dying, at least not right now. I’m working on figuring out how to live with this disease.
And that’s why I say I think I’ve reached a new phase. I feel more settled. “This is my life now,” not, “I need saving; please, someone help me.”
Everything happens for a reason
I believe that everything happens for a reason. That’s a controversial statement nowadays. How can I say that when the world contains people being killed because they’re not the “correct” race or gender and children being caged for their parents trying to gain a better life?
I believe the reason that that statement is controversial in this culture is because we’re trying to assign a reason to these things that’s both way too complicated and also steeped in patriarchy, imperialism, and capitalism, all concepts that have no real substance but that have a strong grip on the mind of the Western collective. Since being diagnosed, I have spent an extremely inordinate amount of time contemplating spirituality, the nature of the universe, and death, so a few things have become self-evident to me.
Buddhists refer to maya, the fact that the world is an illusion. There’s also Plato’s allegory of the cave, which talks about how everything we experience as form is just a shadow of the real. Although we’re raised to believe our reality is true and unchanging and that the culture we live in right now is the pinnacle of human potential, the fact that it’s not is a concept that goes back millennia. At some point, arguing with ideas that ancient is tiresome, at least to me.
And from what I have experienced, exhaustion, strangely enough, seems to be the beginning of healing.
I’ve spent a lot of time evaluating my life up to this point, and if there’s one thing I truly would change, it would be to start understanding these things a lot earlier. Like, a lot earlier. I’ve spent so much wasted effort, agony, and self-doubt on swimming against the current of Truth.
The simplest, most self-evident thing that I know is that we exist. While this seems so basic as not to be mentioned, it’s an important concept to think about — to decide what it means to you. If we exist, then that means there is a cause for us existing. That’s how three-dimensional time and space works. Yet we overlook it all the time, especially when we’re feeling depressed, anxious, or otherwise out of sorts.
The second most self-evident thing that I know is that the reason for our existence is not complicated. Once we start wrapping up reality in complex concepts, we move away from what is true. It’s like we’re building some kind of rickety structure with more and more pieces hammered and screwed and duct taped on, and the more we add to it, the more precarious our perch becomes. How would you feel sitting atop a building that might fall apart at any moment?
In contrast, we can look around and see how things operate. In staring into a flower, contemplating the Big Bang, and letting ourselves bask in the glow of the sun, we gain insights into the true nature of ourselves.
The sun rises in the morning, the moon goes through her phases throughout the month, winter and summer ebb and flow, and plants bloom and die within a regular cycle. It’s that simple, and it points directly back to the reason for our existence.
We’re not here to fight and coerce one another and assert our dominance.
We are here to grow and spread and live.
I’m in a strange position right now, one that affords me a large measure of privilege. When I was commuting three hours a day on a crowded train, working long hours as an IT Project Manager, and trying to assuage an eternal exhaustion that seemed to well up from my soul, I couldn’t even begin to fathom how to connect with the principles I just outlined. But now that I have a piece of paper that says “disabled,” I get to stay at home, rest, and think on these things.
At the same time, that one decision that the insurance company made on my behalf is terrifying. I know that it’s difficult to get the decision that you’re disabled, and every other person I’ve talked to that has gone through it has struggled. Mine was simple. I filled out some paperwork, my oncologist sent over her evaluation, and I got a letter saying that I was on disability until retirement age, at which point I would go through another evaluation. Part of me, whether I want to or not, continues to wonder what exactly was in that evaluation. What did she say to them to convince them that I couldn’t work? What does the insurance company’s decision mean?
It’s just one more concept among many that I have encountered over the last three years that is “both/and,” when at first glance they would seem mutually exclusive. I have been both deemed unfit for regular life, an outcast of sorts, and also have the privilege of extra time and energy that I don’t have to spend working.
It’s not all roses, though
I have been struggling since chemotherapy with an insidious tiredness that my family doctor, my oncologist, and that dumbass naturopath were scratching their heads over. The naturopath didn’t seem interested in anything but my wallet (and the treatments were not covered by insurance), so that was a waste of time and money. My oncologist on the whole didn’t seem to believe that what I was experiencing was out of the ordinary, so I only briefly tried and failed to get her to help. And my family doctor did a bunch of tests, which all came up basically normal except for my iron, which we straightened out a year ago. Yet the tiredness continued.
Thankfully, I’ve been moving more and more toward listening to my body and allowing my intuition to speak to me.
In parallel to all of this, I’d been having problems with gut cramping, which again was met with a head scratch from everyone. Herceptin can cause abdominal cramping, so I received direction to try an over-the-counter medication that helps with things like IBS and Crohn’s pain. Thankfully, that seemed to help, but I wasn’t sure it was the root of the problem.
I finally woke up one morning and thought, “I wonder if the percocets have anything to do with this.”
Sometimes I feel so alone. It seems like I’m the only one who’s ever had to navigate the world of medical hit-and-miss. In another “both/and” situation, current medical science has saved my life and it’s come up snake eyes on a lot of my other issues. I am hoping that talking about it will help others feel not so isolated.
When I was originally diagnosed with cancer, it was because there was a large, metastatic tumor in my jaw. This has been a source of pain ever since then. Although the x-rays and scans all show that the tumor is now gone, the pain remains. Not as bad as originally, but enough that, without treatment, it makes life difficult. In this blog, a couple years ago, I chronicled the journey with CBD oil, and back then, I finally decided that I would stick with my easy-to-take pill, especially given that it worked and the CBD oil didn’t seem to be doing much of anything but costing me money, since it also was not covered by insurance.
But on the morning a couple months ago, I started googling to find out if percocets have ever been linked with gut problems, and I found out that they have, indeed. There is something called Narcotic Bowel Syndrome, which is not well-known by doctors. Opioids seem to mess with the guts, both screwing up the microbiome and causing the pain receptors in the intestines to be overly sensitive. Once a person goes off opioids completely, most symptoms disappear within a year. Someone who has been diagnosed with a previous gut disorder (like myself, who was diagnosed with IBS, but then I did an elimination diet and discovered I had fructose malabsorption) has a greater chance of reacting to opioids in this way.
I spent a day in contemplation and then decided to stop taking the percocets. I was on a fairly low dose, the minimum I needed to keep the pain at bay, and I never considered that it could be screwing with my life. But as I went off the pills, I decided to read up on opioid withdrawal. What I discovered was disturbing.
For non-time-released opioids, which I was on, withdrawal symptoms can set in within six to eight hours.
So when I woke up in the morning, feeling like a pancake, feeling like my entire body hurt, feeling like an awful waste of space, I was… going through opioid withdrawal?
What’s so disheartened about this is that I went to my family doctor and described the symptoms and she — she who had prescribed me the percocets — had no idea what could possibly be causing my fatigue and body aches.
So before I realized what was causing the everlasting tiredness, I used the pills just as they were prescribed. When I felt some pain, I popped one. I was taking about 1-3 a day, and the totally ironic part is that it never occurred to me to increase my intake to remove what I now know as withdrawal symptoms. I wasn’t an opioid addict. I was too clueless to be an addict, apparently.
I’ve been off the percocets now for a couple months, and I’ve gone back to CBD oil to help control the pain, which thankfully now seems to be working with the other drug out of my system. That’s the good news.
The bad news is that a small part of me feels like I’ve been wasting my life — my disabled, sit-around-and-naval-gaze life.
Speaking of insidious, this is what our rickety-building culture does to a person. Even though I was diagnosed with a life-threatening illness, and even though I still have it (my scans are stable, but I still have cancer in my bones and breast), my negative self-talk continues rampant in my brain. “You should be doing more,” it says. “You’re not earning your keep.”
Earning my keep? Does a flower justify why it blooms? Did the Big Bang put up a social media post on why it exploded? Does a tiger walk around explaining to its tiger-cousins what its contribution to the ecology of the mountain is? Why the fuck are we so concerned about earning our keep?
(The answer is capitalism, which is killing many of us. You want to know why I got cancer? Capitalism.)
At least I’ve now reached the point where I can hear that negative voice, question it, and replace it with something better.
With the rest gone, who am I?
I have been grappling with a lot of things, as you might imagine, and one of those things is: who am I, truly? I am in a book study group right now that is reading through Eckhart Tolle’s A New Earth. From Chapter 4:
Is it possible to let go of the belief that you should or need to know who you are? In other words, can you cease looking to conceptual definitions to give you a sense of self? Can you cease looking to thought for an identity? When you let go of the belief that you should or need to know who you are, what happens to confusion? Suddenly it is gone. When you fully accept that you don’t know, you actually enter a state of peace and clarity that is closer to who you truly are than thought could ever be. Defining yourself through thought is limiting yourself.
But it’s very hard to reach that place. I think that I do reach that place off and on, but it’s elusive and escapes me almost as soon as I register the idea that I’ve reached it.
Shortly after my diagnosis, I began stepping back from social media bit by bit, until for long stretches of time, I didn’t go on any apps. It was hard at first because those sites have been specifically created to tap into the human mind’s pleasure and reward center to keep us coming back.
— As a side note, there have been studies showing that people who believe they are not susceptible to the brainwashing effects of news and television shows are actually more susceptible to those effects than those who are aware of what’s being done. I find this so interesting because mindfulness once again wins the day. —
I made a decision on how much time per day I would spend on social media and what kind of activities I would engage in. Political outrage has also become quite the time suck, and it’s so easy to get drawn into it. Everything about television, news, and the internet has been engineered to make us feel righteously indignant, no matter what side of an issue you fall down on. And social media especially has also been curated to create a tunnel where you go down deeper and deeper into your own beliefs and reinforce them again and again.
It’s come to the point where we’re telling one another, “If you’re silent on this issue, that means you’re supporting the opponent, which makes you as morally repugnant as they are.” And you know what? I’m just not here for that. I will tell you exactly why you can’t stop reinforcing your own beliefs, and it is because you’re too afraid to look at your own fear of death.
Original TikTok post
But I digress.
Now that I’m in a headspace that’s cleared of the static of the opioids I was taking, I’ve had more energy and stamina to focus on other things than barely getting through a day. But as my life has opened up, I’ve been confused as to who I am and what I want to be.
I spent most of my life cowering in a nameless fear of being unable to take care of my family. (Please see: capitalism.) I started working for a corporation right out of college because I was terrified of “not making anything of myself” or “being a drain on society” or… I don’t even know what. At this point, it’s hard to name because I’m starting to heal those wounds, but it really was an unconscious fear of becoming something shameful.
And now I have a serious illness, I’m on disability, and if I look back on my life, I haven’t “made something of myself” in the way that I wanted to. The oxymoron is that the fear of not doing anything worthwhile with my life led me to trading my life for the illusion of a security that didn’t exist.
It hit me so hard for a while there. For most of my life, I was under the operating assumption that if I held down a “respectable” job, kept my nose to the grindstone, and just did what was expected by society, I would be guaranteed a tidy little pension and a few short years that would belong to me at the end of my life. So, as Dr. Phil says, how’s the working out for you?
In answer to that question, I go back to what I was saying in the beginning, which is that we’ve made life overly complicated.
I don’t need to justify my existence to anyone — not the government, not the insurance company, not the people who follow me on social media, not you, not even myself. Does a bear shit in the woods? Yes, and he doesn’t apologize to the National Park authority for doing it. He just does it because that’s what he needed to do.
What would life look like if I lived that way?
(Not shitting in the woods, per se, since I am much more comfortable in the confines of a real, live bathroom, but you know what I’m saying.)
During another book club this summer when we were reading Welcoming the Unwelcome by Pema Chodron, one of my fellow classmates told us about something she experienced earlier that day. She was in her garden, pulling out some weeds, when she happened upon a small plant that seemed stuck in the ground. She scraped the dirt back and pulled it free, and there she discovered a tiny little oak shoot growing out of an acorn so large it dwarfed the little seedling.
I think about that seedling all the time.
What if we are that small, growing, pre-oak tree?
I can look at my life and say, “What have I accomplished?” Or I can look at my life and say, “I am a tree in the process of growing.” At some point, we’re that wee seedling, poking our little heads out of the safety of the acorn, reaching up toward the sunlight, both potential and something more.
We’re not failing to provide for our families. We’re not struggling to keep up with the shiny Instagram pictures of smiling babies and perfect couples. We’re not full of past mistakes that are keeping us from being happy.
Instead, we are both full of potential — reaching for the sky and becoming the wise, old oak — and life experiences — the acorn growing on the mother oak tree, falling from the branch, and pushing out a sprout. Does the acorn worry about what it’s going to do tomorrow? No, it is an acorn, it does its acorn-y things, and it lives.
Why are we taught from birth that living is a sin? (Capitalism.)
Why are we so afraid that allowing ourselves to blossom into what we are destined to be is wrong? (Fear.)
And where do we go from here?
I don’t think I’ve ever hidden that I’m a bit of a weirdo. I’ve always been a bit of a weirdo, but I’ve tried very hard — successfully, I think, for a while at least — to fit in.
I’ve been so afraid of what people who know me will think of my interests, while at the same time being unable to truly hide every part of myself. It’s always coming out, one way or another, despite my best attempts at keeping it stuffed inside. And then I got cancer and realized that stuffing it inside would literally kill me, and I’ve spent three years trying to figure out what that means.
I started a TikTok a couple weeks ago, intending to talk about my interests anonymously to the faceless internet. But it’s started to give me more confidence to embrace who I am and what I believe. Some people use TikTok to post funny videos — unless you’re on TikTok, that’s probably all you know about it — but some people are talking about what matters to them. And that’s what I’m using it for.
In condensing my thoughts into sixty seconds or less — and if you’ve made it this far, you know how difficult being condensed is for me — I discovered that I do have a lot to say. I have lots of subjects I think about. I want to share my self with the world.
Yet I have this deep-seated fear of what my family and friends from childhood will think about the person I really am. And I don’t know what to do with that feeling other than name it and put it out there for everyone to see. I know that pretending to be what I think they want me to be (which is different than what they actually want me to be!) is not healthy. And I also know that I’m not that great at keeping my philosophical ideas to myself. I mean, I wrote an entire novel series based on the premise that most of what modern Christianity teaches is wrong.
But there it is.
I’ve never been afraid that I’m going to hell. I don’t believe in hell, and I’m pretty sure I never did. I can’t remember one single time when I thought seriously that something I did would send me to an actual place that tortured people for all eternity. To me, it was always a metaphor for… something.
What I did feel strongly was a lack of connection with people. I was a strange child, as you might imagine when you see the strange adult I’ve turned into. I felt the lack of emotional bonding with my family and peers strongly. The things people did directly and indirectly to me underlined that I was unlovable, and a deep, unconscious part of me embraced Christianity because I wanted so desperately to please someone enough that they would heal the hole in my heart.
What I’ve learned in my 39 years of life and struggling with cancer is that the only person that can heal the hole in my heart is me. Not “a personal relationship with Jesus,” not my pastor, not someone’s idea of what God wants from me. The more I look for validation outside myself, the further I get from the peace that passes all understanding.
— As a side note, as I heal from my traumatic childhood experiences with Christianity, I’m more able to understand and interpret the Bible in a way that has begun to seem so True that it’s tinged slightly with a feeling of supernaturality. Instead of trying to force it to mean literally what’s written on the page, I have researched the languages it’s been translated from, the cultural context it was written in, and the surrounding religions it borrowed from. This has exponentially increased my spiritual connectedness, which has been both a surprise and a delight. The Bible is no longer something I turn away from, but something that can inform my spiritual life. —
There are plenty of spirits in this world who are dedicated and willing to help us come to internal peace, but we have to do the labor ourselves. And the only way we can do that is to stop looking at what other people are doing and start focusing on our own actions, thoughts, and beliefs. That is in direct opposition to the steady diet we’re fed on social media and TV, which tells us that all day, every day, that we need to be evaluating, judging, and proclaiming on other people’s behavior.
What I know, too, but that I have a hard time dealing with head on, is that the more I hide who I really am, the less likely I am to find people who are interested in the real me. I spent twelve years going to an office, talking to people I lowkey hated, and forcing myself to fit in despite despising every minute of it. You would think that after all that suffering, I would find it a relief to let go and be the little seedling I know myself to be. But it’s hard; it’s scary; it makes me feel even more terribly lonely. A little part of my heart still believes that pretend connection with people is better than risking real connection.
So here is a probably incomplete list of things I’m interested in, which I have been talking about on TikTok and that I might begin talking about on my blog, depending on how I feel. Because of the percocet tiredness, I haven’t been interested in much of anything, including writing fiction or my blog, but I’m hoping that is going to change because I know my heart has many things I want to say.
- New Age
- Comparative religion
- Ceremonial magick
- Quantum physics
- Energy healing
- Social justice
- Bold, trendy makeup
Maybe now that I’ve gotten this out of the way, I’ll be able to share more of who I am. I’m still figuring out how to deal with the sucking egregore of each of the social media giants, but I am confident I’ll get it figured out.
If someone doesn’t like me, it’s their perogative to move on. And maybe, by letting my light shine, I’ll be able to attract more light shiners — the kind of people that I want to be around.