Threelittlebirds

In the Infusion Room

I read somewhere that chemotherapy used to be so awful that it had to be administered in the hospital under sedation. The room where I receive my treatment is large, spacious, and sunny and I’m generally only there for the duration of the treatment which has never been longer than a few hours. The chairs are easy-to-clean vinyl loungers, the blankets are warmed in advance, and the Wi-fi is strong, generally. I’ve come to think of it as similar to boarding a plane in a spacious first-class cabin. I’m going to be there for a few hours, not able to do much more than what I can do sitting, and the nurses even offer (free) snacks. Destination: one step closer to getting rid of this cancer.

IV poles poke up along the aisles of loungers. They remind me of garden stakes in a vegetable plot but instead of the names of what plants will emerge from the dirt, the plastic bags name the drugs dripping into the patient. Instead of marking new life emerging, the labels denote what cancers are being snuffed out, hopefully anyway.

I have moments when I feel like I’m in some version of the Wizard of Oz. The doctors are like Scarecrow, accessing all the information stored in their big brains to troubleshoot and solve the problems, side effects, trying to get all of our bodily systems working together. The nurses and nursing assistants and even the administrative staff are like the Tin Man, always checking in that we are doing OK, offering warm blankets and pillows, snacks and water, really listening and offering suggestions for how we can be more comfortable. I suppose that we, the patients, are the cowardly lion, then. Not that I feel particularly brave because I don’t feel like I have a lot of choice in the matter right now. But I suppose that there’s a certain amount of bravery in each of these interactions, in being honest and vulnerable, in asking for help and what I need.

I’m loathe to venture down the road of asking, “Who is the Wizard of Oz?” I say “loathe” because I don’t want to think that there’s a “villain” in all of this. And I suppose maybe it’s the insurance companies and maybe the pharmaceutical companies, controlling what treatments will get paid for and which won’t from behind the curtain. I have to believe that, at times, the curtain gets pulled back on these institutions and systems that seem to, at times, exist first and foremost to make money. I’ve got to believe that sometimes a little light, a little humanity shines into these places and they are able to join the others in the ultimate goal of healing. Otherwise, maybe they can all just float away in a hot air balloon.

I’m doing this for myself.

And when I say “this”, I mean writing and posting here. But, really, at this point in time, I can and should extend “this” to include, well, everything.

I write here to help me focus my thoughts, to try to make sense of what’s going on with my body, my health, my sense of self. Without some sort of outlet or direction, the half-formed thoughts just kind of bounce around in my head. Bang. Bang. Bang. Nowhere to go. No room to grow. But if I can push them out into a word, a sentence, a paragraph, a post, no more rattle and bang, bang, bang. Or at least until the next half-formed thought bursts through.

And here, I am my own audience. I have to be. And I’m learning how to be my own best audience. I don’t judge myself what comes out here. Or, at least, I’m working on not judging. The anonymity helps. I try to be honest about what I’m feeling, not performative. I could keep all of this in my private journal, I suppose … But the idea that someone might read this — but that both of us will remain anonymous — also allows me to, perhaps, dig a little deeper and to try to find my own humanity in the midst of all of this. Paradoxically, having this writing be public (and yet without context and comment) makes me re-center myself again and again, without guilt or without feeling as though I’m being selfish. It’s one thing to write about myself in the privacy of my own journals; it is quite another to continue to focus on myself in a public (albeit anonymous) forum.

And perhaps I’m hoping that some of this will carry over into how I’m coping with cancer and the treatments and even just how I treat myself in life in general. I must center myself, again and again. And when I say this I mean that I must bring myself back to the center of the narrative. Yes. I have to be the “main character” and, more importantly, I have to see and value myself as the main character. I’m not a show runner or writer or producer or even a key grip or caterer. I’m the main character; the entire story revolves around me, my needs, and my motivations. And as uncomfortable as it may feel to accept that role here and to give up attempting to be in control or even to be a support person, having cancer has forced me to not sideline myself. I still wish I didn’t have cancer. If I woke up tomorrow and someone said, “I can take away this cancer right now,” I’d certainly take them up on their offer. I don’t think I will ever be someone who is able to be grateful for cancer. But for right now, perhaps, I’m one step closer to accepting that living with cancer doesn’t necessarily mean stagnation. In fact, maybe it can mean the opposite: growth.

Too much information is, well, too much information.

I’ve mentioned before on here that I try to resist the urge to google every symptom, every comment from the doctors and nurses, every “cure” and dietary suggestion. It takes a great deal of will power on my part. I have this belief that somehow if I can just learn everything then maybe I can heal myself… or something. Like, somewhere in the vast piles and websites and pages and servers, there are some bits of information that if I could just find the pattern, link them together then things wouldn’t be the way they are.

Of course, this is ridiculous and, actually, I’ve had moments that all of this information is actually harmful. I’ll read someone else’s story in some chat room … a story that doesn’t end well and it’ll put me in an unhelpful funk as I try to figure out how that’s not what’s going to happen to me. I’ve come across numerous people on line who tout diets and alternative “therapies” as cures for cancer. In the midst of chemo pain and fatigue, the alternatives sound very inviting. But I also feel like I’m drowning in on-line information and stories and at times it takes me away from what I’m experiencing right in front of me in real life, it takes me away from trusting my doctors and other care providers and, most importantly, from trusting myself.

For example, on top of the chemo and cancer, I currently have a cold. It’s making it hard to sleep and do much of anything. What can I do? Rest, read, watch TV and movies, spend time with the people around me. One of the things I can’t do is comfortably take a walk. And, yet, because I’ve read all this on line information about the importance of exercise to healing, part of me is putting a lot of pressure on myself to get outside in spite of the pain and discomfort. In other words, all this overload of information is making me ignore what my body is trying to tell me: to just rest.

I have an unhealthy sense of perfectionism. (Although what perfectionism is health?) I want to be the “perfect” patient: informed, following all the guidelines, asking all the “right” questions, cheery but not too much. Just as I’ve always wanted to be the perfect well… everything … to the point where it’s often crippled me to inaction. But, honestly, inaction is kind of what I need right now. I don’t need to seek out information. I don’t need to “perform” in order to receive care. I need to rest. And trust. Rest and trust.

There is no gratitude here…

Yes. I have fallen prey, at times, to the idea that a daily gratitude practice will somehow improve my mental health, my goodness, my overall health and my happiness. I’ve tried to practice it, even going so far as to making daily notes in my journal.

But it all felt so forced. And I kept falling into the trap of finding things to be grateful for because other people don’t have them. “Well, at least you have food on the table and a roof over your head!” It put me in a frame of mind of focusing on other people’s suffering as a way to trick my mind into not focusing on my own.

I have moments and hours and days where everything feels like crap: my body, my brain, even my soul seems to ache. I can’t muster gratitude. And this makes me feel like, on top of it all, I’m a bad person. I have moments when I feel like this cancer is something I could have prevented. I have moments when I feel like this is some sort of punishment. And who’s to say it’s neither of those things? Not that it really matters: the past is in the past and I can’t undo whatever I did to cause this to happen.

I’m not currently a fun person to be around. Maybe I never have been. Maybe what cancer is doing is allowing me to drop the mask, to not feel like I have to be “happy” all the time, to not present a clean and tidy house, a cheerful front of the consummate people pleaser. And maybe this is what it means to actually be me. Maybe I’m just an ungrateful person with no energy who is currently relying on everyone else to get things done. And maybe that’s ok.

Extending grace…

Many years ago someone asked me, “Why are you so hard on yourself?” He was a professor in graduate school and this question wasn’t germane to my research. His line of inquiry was too faux therapy especially in an academic setting where I was paying loads of money to learn from this person, not to examine his impression of me. It was a question better suited for him to invert and ask in the privacy of his own self-examination. “What kind of systems/ institutions/ cultures have we created (and continue to perpetuate) that demand perfection of human beings?”

OK. Stop. Wait.

I started writing this a few days ago. I promise, it was all going somewhere. This was all leading to some thoughts about how cancer and chemo has lead to making certain day-to-day things challenging. And ultimately, how I need to extend grace to myself, that I’m doing the best I can and this is just where I am with things.

Or, at least, that’s where I think this was all going.

But part of this whole “having cancer” thing is that I have times when I can’t recall words or trains of thought, where not only does my body feel sluggish but my brain does too. And I hit one of those moments and I couldn’t carry on finishing this post. I needed sleep.

But also: “extending grace” to myself felt like I was just completely passing over the part where I’m also just really pissed and, at times, in a fair amount of pain. The basics are hard. Eating is hard. Finding things I can eat that are also healthy feels impossible. Going to the bathroom is hard. Cleaning is impossible. And I’m lucky: I have a lot of people in my life who are willing and able to take on some (a lot) of this, but, well, it still all sucks. And the people in my life are also burdened by this. My spouse spends far too much time on the phone with insurance and billing trying to fix their mistakes while they breathe down our necks with threats of sending it all to a collection agency.

I overheard a conversation at the cancer center in which a patient was having a hard time arranging transportation. I’m not in that situation. I have transportation and I have people willing to drive me if it ever comes to that. Part of me feels like I should be grateful that I’m not in the situation that that other patient is in, trying to make it to a chemotherapy appointment. But mostly that feels like, “well, it might be shitty over here but at least I don’t have it as shitty as that person has it.” When really, why should being sick be this shitty for any of us?

Two Minute Cancer Hacks

Eat chia seeds. Lots and lots of chia seeds. Also red dates (aka jujubes), stinging nettles, blueberries and mango. Kale. Protein. Low fat.

You will crave fufu and egusi, razor clams, frozen raw whale and narwhal, snow fungus, ube everything, and a fried chicken sandwich from Popeyes. These cravings have not been brought into laboratories, placed in Petri dishes, and looked at an under a microscope. They are a no.

Follow a strict routine of early waking, meditation, creating before consuming, exercise, work. Maintain a clean and organized space and home. Recycle. Change your oil every three thousand miles.

Be spontaneous. Follow your joy. As long as your joy doesn’t involve scrolling on your phone, staring at the ceiling, or chocolate of less than 97% cocoa content. Follow your joy if your joy is hiking the Sierra mountains on the weekends.

Make everything from scratch. Make everything by hand. Do not drink alcohol unless it is red wine.

Pray. Quietly. Inside your own home. Seek vengence. But not a wrathful, bold vengence. More like a passive aggressive one.

Take out the trash. But, like, literally. As in: remove items from your home that have been used or dirty and place them on the curb to be picked up by sanitation worker. Not as in, remove people, energies, and activities from your life that are disruptive, draining, and toxic.

Always look smart. Don’t worry about being smart.

Sleep. For six to ten continuous hours. At night.

I am an alien. Not one of the tentacled ones or even multi-eyed ones. One of those big headed ones that always looks a little lost. That’s what I see when I glimpse myself (sans head covering) in the mirror. I’m one of those bewildered, naive aliens, one that, perhaps, got accidentally left behind to fend for themselves in this unfamiliar place.

Once, I thought that the cancer center would one day become a familiar and perhaps even comforting place. But it hasn’t. When I think of it, my stomach twists up. It’s sunny and well-lit. The chairs are comfy enough and certainly the nurses and staff are kind and caring. But the place still gives me the heebie-jeebies.

And maybe that’s a good thing. Maybe it shouldn’t be a place I’m too comfortable. And because it makes my skin crawl, I try to not think about it too much. I have this habit of thought that I think, ultimately, is problematic. I’ll think about an up-coming situation, say, a chemotherapy treatment. I’ll try to imagine and plan for every scenario and situation. I’ve convinced myself that this makes me feel as if I’m in control, as if by imagining every scenario, I can be prepared and in-control. Difficult things might happen but at least I’ve already thought it all through. I’ve troubleshot all the troubles before they’re actually troubles; shot them right out of my imagined gray-clouded sky.

Or so I’ve often felt.

Of course, none of that is actually helpful. Imagining every possible outcome doesn’t actually grant me more control, it doesn’t make the bad scenarios less or more likely to happen.

Lately, as I’ve tried to imagine my next treatment, the sensation in my gut is so unpleasant, that I switch topics. Sometimes, I even manage to just bring myself back to my present moment, where I do have some (albeit limited) control and where I’m able to sometimes eke out small moments of enjoyment.

I’m lazy.

Or at least that’s what the voice that’s somehow burrowed itself into my head tells me.

My higher self knows that I’m just sick, that I’m dealing with the side effects of the chemo and the cancer. But it’s hard to hear that voice sometimes. Much of the time.

My spouse has been doing much of my care. As I gradually have days where I can do more, it still feels like not enough. I still feel, well, lazy or that I’m just making an excuse. I feel like I’m not productive enough. Enough for what?

Each time I step onto the scale at the doctor’s office, the numbers go down. There was a time when I would have been pleased by this. But I know that now it’s all muscle loss. I’m growing weaker with the number shrinking. And I know that exercise would help, but… It feels impossible. Where do I even begin with exercise when I have days where just getting up and down the stairs leaves me needing to sit? Where do I even begin when I have moments when merely trying to retrieve a word (much less some sort of plan for exercise) is a struggle?

The voice that tells me I’m making excuses sure doesn’t have a hard time retrieving words.

I’m going to start a new phase of my treatment and I’m anxious about it. The last phase absolutely sucked in terms of the side effects, but at least I knew what to expect, more or less. I’d settled into a routine, more or less. So, really, it’s the change, the unknown that I’m fearing. I’m trying to come to some sort of peace. I’m tempted to google the new treatment, to venture down the rabbit hole of message boards where patients share their experiences. But I know that that will just lead to more anxiety, more chaotic thinking.

The only way for me to know, for sure, how I will experience this new phase is for me to experience it for myself. This brings about a bit of a feeling of loneliness, being alone in facing this next, new-to-me phase. I have to remind myself that I’m not the first person to be here, in this position. The treatments I’m receiving aren’t brand new. Others have gone through this. Other people have faced change and the unknown and far more difficult challenges and I try to think about them as my companions and role models through this.

I named this blog “Three Little Birds” because of the Bob Marley song; it’s one that fills me with hope. Music (art, stories, books, poems, etc…) has made me feel less along through much of this, through much of life. I didn’t put together until just now that Marley died from cancer. So I guess I just realized that Bob Marley is my companion through this twice over: once through his music and once as a fellow human being facing the unknown of cancer and its treatments.

In the months prior to my diagnosis, one specific prayer I made was that I would have a direct encounter with God’s love. I cannot really piece together now why I had that specific prayer at that point in time, but I do remember thinking that it would be answered in a dramatic way: a vision, something cataclysmic. And I guess that a health crisis is pretty profound. But the way that prayer was answered was much more subtle. Since that time, I’ve encountered what I can only describe as God’s love through the care providers that my health crisis has put me in contact with. Doctors, yes, to some degree, but mostly it’s been the nurses and then also people in food service, people cleaning the facilities, people transporting me from place to place. There have just been a lot of genuinely loving people showing care and kindness. In the tougher moments, this bouys me.