Apparently I like to keep things exciting and interesting. I mentioned after my first taxol treatment that I did not have an allergic reaction during the infusion (though that night, I told my mom my throat felt itchy, so I took a Benadryl). Treatment number 2 was this past Thursday, and the infusion itself went fine. But Friday afternoon while driving myself to an appointment, I noticed that I wanted to claw my face off due to the sudden onset of intense itchiness. I looked quickly in the rear view mirror. My face was bright red, puffy, and hot, with little spots all over it. I looked down at my neck, which was also starting to itch. That, too was bright red. I immediately took Benadryl.. 1 adult and 1 child… because I still neeeded to be able to drive myself home (thank goodness I had a glove compartment stash of drugs). I called Pluta and told them, and they said they wanted to see me. So I went from one appointment directly to another, which is unfortunately a normal occurrence in my world right now. My nurse practitioner told me it was a delayed reaction to the taxol, which is extremely rare (go figure), and that I’ll need to be seen by the immunologist for further testing (yay!). They prescribed a tapered dose pack of prednisone, and I will have to take it for the 6 days following chemo for the remaining two treatments. So I have to take pills for a week after each treatment. Doesn’t sound like a big deal, right? Except that on steroids, I am ravenous, wirey, anxious, bitchy, and unable to sleep (and the insomnia just gives the anxiety and bitchines more fuel).
Not to mention the bloating and weight gain. Enough is enough. I am trying so hard to be compassionate and gentle toward myself at this time of healing but Jesus. It seems as though I’m failing because I’m constantly frustrated in my skin, I’m not used to having a stomach, I’m not used to being so wide. I’ve gotten so that I won’t even turn the lights on in the bathroom when I use it, or even when I bathe because I don’t want to catch myself in the mirror right now. Being unintentionally bald and fat and knowing that you’re just going to get fatter from these drugs you’re being forced to take to prevent an allergic reaction from an already-toxic treatment…. this all just feels like too much sometimes.
I’m making an effort to put nothing but nutrients in my body because I am so uncomfortable in my own skin. For example, I made a “dessert smoothie” with broccoli sprouts, kale, spinach, banana, raspberries, cacao powder, almond milk and flax seeds. It wasn’t bad…. it wasn’t good either. Certainly not dessert. But I can tolerate just about anything if I think it’s going to be good for me. That’s the survivor in me, I suppose.
What’s frustrating is that there’s another drug in the same class of drugs (taxol belongs to the class of drugs known as taxanes) that does not cause an allergic response in people. It’s called abraxane, and like taxol, it targets the microtubules in the cell division process, but it is packed with a different preservative-one that people are not allergic to. The problem is, you have to have a reaction to taxol that sends you to the brink of death for insurance to cover abraxane. Some hives on my face, chest, and neck aren’t going to cut it. So I have to suffer more than I already am with prolonged steroid use because my body didn’t react “enough”, as in, my respiratory system wasn’t affected. What a world we live in…
I’ve been feeling a bit better at least generally on an emotional level, thanks in large part to cannabis, and the consequent introspective thinking and feeling I’m able to tap into when I’m high. I’m stoned most of the day on most days. And right now, that’s working for me. It’s making this all more tolerable. Pot helps me see things with a bit more clarity. Even my own mind- it helps me to detach from my thoughts so that I can observe my patterns, the traps I fall into, and the beliefs I seem to hold about myself and this world-some of which require some attention. Thank god for pot and meditation in helping me to recognize this!
My acupuncturist says that people who are innate healers often have an initiatory illness or some kind of trauma that propels them down the path of spirituality, and therefore, the practice of healing in some capacity. He was suggesting that he believes that I’m a healer of sorts. It is comforting to me to think that my pain might be transformed in a way that could be useful in helping others. This idea is what keeps me honest about all that I’m going through. It’s healing for me to express my truth and I hope someday it might be helpful for other people to read what I’m writing or hear what I have to say. I know that I have felt comforted by the words of Augustan Burroughs, Marya Hornbacher, Pema Chodron, to name just a few, because their words are so incredibly honest, raw, and relateable in their humanity. They make me feel less alone. (And being alone, or feeling alone, I’ve recently discovered, is one of my biggest fears… …. )
These days, I find myself thinking about what it means to be human, which is essentially a question the whole field of sociology is devoted to answering. Asking what it means to be human also requires us to consider what it means to be dehumanized. I think about this a lot lately. Cancer treatment definitely feels dehumanizing to me on a number of levels. And pinpointing why/what about it feels dehumanizing is helping me to understand my values as a human, and how I define being a human being.
On a somewhat unrelated note, sometimes I’m amazed with how little words do to express and connect us to each other. For example, we all know the word “sad”, but we could experience the actual emotion completely differently. My concept of sadness and devastation and trauma and how those things manifest in my physical body is completely different from your concept and physical embodiment of those things, and these differences are informed by both life experiences and DNA. And yet, we all strive to feel connected. I sometimes wonder if true connection and understanding is possible, because language can only do so much.
I believe that to love is to know, and I think we have gotten so far away from empathizing with our fellow man because we are disconnected from ourselves. Meditation is helping me to confront myself in ways that aren’t always comfortable. But I find that if I can sit with the discomfort for just a second longer, it usually shifts into something else. That’s the thing about pain and suffering: our ideas about pain and suffering and what that pain is inextricably linked or caught up in is often worse than the actual pain itself. Our minds make things more painful, in other words. I’m trying to tame my wild beast of a brain so that I can get through the trauma of constant appointments and chemotherapy and overall cancer-centered life (right now) a bit easier.
I wish we humans could tap into each other’s pain more readily instead of keeping it at arms length. I’m sure I will talk more about this at some point but my brain is going wild with texts to consult and quotes to share and statistics to recite on this matter, and I’m just a little overwhelmed right now…
On the subject of anxiety:
Two nights ago, I got way too high and started having panicked thoughts about death and dying. I was laying in my bed trying to listen to a guided meditation by Jon Kabat-Zinn, whose voice and words are usually soothing to me. Not that night. I was literally shaking. I had to get out of bed. I found it incredibly triggering. Probably because on some level, I equate embracing meditation and all of these more spiritual aspects of living with an acceptance of my death, which my soul seems to be resisting at this time. Its as if I see acceptance of the reality of death in general as a form of “giving up”. I think it would be healthy for me to get to a place of acceptance of the impermanence of life, while simultaneously still investing in living- somehow in my brain, these two concepts seem contradictory, so that’s something for me to deconstruct…
During my panicked state, my mind was racing, and this haunting image kept reappearing, assaulting me. It was literally being thrown into the center of my mind; just me, thin and pale, laying on my bed in a room covered in darkness. Alone. I would try to think about something else, but the image would just thrust itself into center stage again. Over and over and over. I had no control over it. And the more I tried to think about something else, the more intense and vivid the image became. What you resist, persists, right?
My panic that evening made me realize that I’m actually more afraid of going insane than I am of dying. Watching my brain do endless, seemingly-crack-inspired backflips was absolutely terrifying. Horrifying, even. I was questioning my very relationship with “reality”. Cancer itself makes me feel groundless, but this experience was like floating in the blackness of the abyss trying unsuccessfully to grab onto something-anything- to make me feel connected to something. Nothing settling about it. The thoughts and images were coming at me like lead bullets, each one penetrating my whole being sharply and violently-my physical body was actually shaking. I had no control over these thoughts and I couldn’t escape them. I tried to write them down to force the gun-shot-firing to slow down, but to no avail. I couldn’t keep up, it was just flashes of horrible images, images of death, images from both my past and my present and my fears around the future, some things that made sense, some things that made no sense, and then I began to wonder if the things that didn’t make sense to me would make sense to everyone else and vice versa. There is something about the isolation associated with insanity that seems unbearable to me. Because I already feel isolated in my current situation. And I’ve always felt a bit isolated and ungrounded with “reality”- I suppose being an “artistic person” inclined to abstract and “colorful” thinking can explain some of that, along with my long list of disorders- take “body dysmorphic disorder”, for example -a disorder that quite literally means you do not see aspects of your physical self the same way others see you-I’ve always felt like I’ve been teetering on the edge of sanity, but never fully crossing over to the “dark side”. And two nights ago I was convinced that I was on the literal edge of sanity, heading toward a nervous breakdown, as if that sort of thing were as simple as a flick of the switch inside the brain, and my pot smoking happened to flick it, sending me reeling right into crazy land. I kept picturing-rather my MIND, not me-kept picturing myself laying in bed surrounded by darkness as my final breaths were escaping my lungs. And I was alone. The fact that I pictured myself dying in complete isolation really deeply upset me. It is clear to me now that there is a lot caught up in how I define “being alone”, and that is something for me to deconstruct as well. I will continue to ask myself, “what constitutes ‘aloneness'”? What would it take to not be/feel alone when confronting death? My fear seems to be more rooted in a fear of isolation and aloneness (and how I’m defining these concepts) than of the permanence of death. Something for me to examine, for sure.
If my thoughts seem jumbled in this entry, it’s because they are. I’m processing a lot emotionally which is sucking up most of the energy I would normally have to devote to making any ordinary sense..
Wish me luck for my remaining two treatments. Fingers crossed that I don’t go into anaphylaxis… it’s shocking (pun intended) that there’s a larger immediate risk of death from my current cancer treatment than from the actual cancer at this point. This world makes no sense sometimes. Or maybe that’s just my insanity talking..