"story of a scar"

I've recently joined an online writing group that meets weekly through Lacuna Loft. It's been really lovely so far- we are spread across the country, but join together for two hours every week on a video chat and write and share our work out loud. It's made me very aware that I should be more diligent in my writing, because I've been really inspired by our meetings together (of which there's only been two! So much fun already.) and it makes me want to spend more time every day just writing down my sputtering thoughts.

Here's a little clip. This is from a 12-ish minute writing block with the prompt: "story of a scar". The thing I value the most about our group so far is that we have a no-apology rule. You are not allowed to apologize for your writing. We know you wrote it five minutes ago; it's rough, messy, perhaps non-coherent. But it doesn't need any explanation. I love that. That's where inspiration comes alive. 

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hello my name is sort-of-Frankenstein. Well, if I’m completely honest with the pretentious English major part of me, I’d really be “Sort-of-Frankenstein’s-Monster”. But yeah, I have weird holes all over the place, and not just the ones you’re born with. I have new ones, drilled into me, deep and deep and things pulled out of me through a medical sippy cup straw. I have holes poked under the thin skin of my wrist and inner elbow, dark mark echoes of stabs from being fished like a salmon in a stream: wildly pushing against the current and pulling away from the hurt.

I have holes in my chest, two the size of bullets straight to my heart. I have knicks in my collar bone to remind me of that fishing wire. There’s plenty to look at, there’s plenty to answer a four-year-old’s question of “what is that” and “is your body better now?”

I don’t know. Because there’s more holes than just those. There’s holes everywhere. Every time I look in the mirror and see the dark circles of my eye sockets, the jutting bones of my cheeks and hollow shoulders. The enemy is defeated, I guess. But what’s left now is a mostly empty monks bowl of a girl, waiting for the generosity of some Samaritan to empty their pocket lint into me. I’m “Sort-of-Frankenstein’s-Monster”, a girl: blood’s enemy and life's eternal question. Are you alive? But how pretentious. Who are you to question what happens?

There are more holes than what you see. It’s been years of building and building, watching it crumble; building and building, watching it crumble. The enemy is defeated, I guess.

I feel like a crevice, a place between other places. Maybe water flows through me in the wet season if we’re lucky, but always slowly dries out like chalk in the next. I’m waiting for that current- either electric fire from my maker bringing me to life, or the water surge- where like a salmon, I’ll leap free into the air.

-b

The Water Table of the Human Condition

"You took it all, but I'm still breathing." 

Okay so, Sia has been on repeat IRL and also in my head for a bit now. She's really climbing the ladder of my cool list. This line has been tumbling around in my head for the past few weeks, from one of her newest songs called "Alive". I didn’t start singing along as a self pep-talk, it's just been in my mind like a welcomed ear worm. Then I realized this morning how much this lyric is saying about my life. Blah blah blah cancer you absolutely sucked everything out of me, but in spite of your efforts, I'm still freaking ALIVE.

Cancer takes a lot. I'm actually just sitting here at my desk with what’s probably a pretty blank expression on my face because I'm not sure what to follow that statement with. Yeah, it takes a lot. It takes away a lot of things, it takes a lot out of you, and it takes a lot of who you are. There were a good 7-10 months when I thought my personality was literally dead. Like, gone forever. I didn't think I had anything left inside me, at all. I am not exaggerating. I felt like a stupid hollowed log of a fallen tree rotting into the ground. Although it didn’t feel even that poetic; and that's not even good poetry to start with. I certainly couldn't have accurately explained how I felt at the time because it escaped words. Maybe I'm trying to explain it now. And maybe you are yourself at a place where you feel this way- cancer patient or not. I’m learning that this is a very real human experience. The experience of fear which often gives way to a dispassionate sensation that’s the one step past terror: a coping mechanism where your emotions just shut off as you watch everything you thought defined you slip away like the smoke of a blown out candle.

I've come away from my experience (haha. "come away" like it's over or something.) with cancer with a hugely expanded respect for the human condition. And I mean that in many ways. Philosophically, the human condition is defined as the essences of human existence: what it means to be a human. It often paints a picture of existential meaning, morality, mortality, etc. It's one of the reasons I am drawn to philosophy; I am sort of cursed with eternal existential crisis. But the respect I now have for the human condition has grown considerably: most notably the interminable human imagination in dealing with conflict. Whether that conflict is in relation to yourself, other humans, the world, or stupid, stupid fast-growing mutant cells that just wanna kill you. The ability of the human spirit to bushwhack through insane circumstances is, honestly, pretty damn impressive. I certainly don't claim to have survived humans' greatest plight or anything, but I have definitely experienced a level of existential (and while we're at it, physical) pain that I had not even touched the surface of before. Whether or not my actual experience is on "level" with some of the most horrific circumstances a human can go through (I don't believe it is. What with the Holocaust, genocide, refugee camps, bombings, child hunger, orphanages, lack of clean water, losing a child; the list marches sadly on and on), I do believe that I have tapped into the water table of the human condition a bit. 

When we experience something horrific- and no person is exempt from this- we tap into that deep flowing river of muck water. We experience the same feelings of so many people have who have gone before us. In a way, it's like a horrifying rite-of-passage to becoming a human being. Again, I'm talking from my own experience here, but I see this imagery in my mind so clearly: It’s like a dark undercurrent of filth that flows beneath the surface of what we imagine life to be before real stuff starts happening. It’s just straight manure, blood and tears surging along under the crust we walk with our baby soft feet. And then something happens and we dip our toes (or wade in waist-deep- what’s the difference, really?) into that murky shit water and it never seems to fully wash away. And the current is strong, and the sewage is thick and disgusting and grips us like a crocodile death roll. It takes us down and it appears to be infinite.

I’ve talked about water before: it’s fluidity of states-of-being, its cleansing and life-giving properties, and the endless cycle it run through on our planet since the beginning of time. But now I’m adding water into the dirty part of living too, and it’s powerful there too. Take drinking water, for example. Millions of people in the world are unable to have clean water in their lives. And as I sit here at my desk while my stomach is telling me I’m slightly hungry and like, yay instagram- it’s hard to fathom that children are dying because the water they have access to is non-potable. It’s filled with dirt and disease. And that changes their lives- shortens them, certainly. There is so much pain. What an unfathomable thing. Our bodies are about 60% water. Blood is 90% water. Our brains and muscles are 75% water. Even bones are made of water. If you get bad water in there, your body just won’t work.

I’m getting increasingly metaphorical here, but back to my picture: So there’s the dark waters of deep shit, whatever your deep shit is or ever will be in the future, and you’re tainted and it won’t wash out, like Macbeth’s bloody hands. Water is powerful. But I also see that somewhere even deeper, a layer way below the unseemly depths of this wreckage, there’s another, different river surge. Picture a dammed river being released, or the water Arwen calls forth to flush those Ring Wraiths down the toilet of Middle-earth (c’mon let out your inner nerd).

Water is a conqueror. The dirty stuff wants to bring you down and suffocate you. But to live through circumstances that challenge us, even break us- living through them in my mind is diving head first into that polluted H2O, pushing deeper and deeper into the earth of living until you break that barrier into that clear, cleansing, beautiful cascade of water that is the deeper understanding of what it is to be a human being. And that in the interminable human imagination and spirit.

All this rambling has surfaced the words of (what a surprise) Rilke. I absolutely did not have these words in mind when I began writing all of this, but I now find myself stunned at the accuracy to which he is able to capture what I am trying to say. Way to go Rilke, you nailed it again with your concise and heavenly poetics that explain better than I ever could:

You see, I want a lot. Perhaps I want everything
the darkness that comes with every infinite fall
and the shivering blaze of every step up.
So many live on and want nothing
And are raised to the rank of prince
By the slippery ease of their light judgments
But what you love to see are faces
that do work and feel thirst.
You love most of all those who need you
as they need a crowbar or a hoe.
You have not grown old, and it is not too late
To dive into your increasing depths
where life calmly gives out its own secret.

and here’s another translation of the same poem that’s just. omg I’m on the floor. the. floor. hnnnngggg

You see, I want a lot.
Maybe I want it all:
the darkness of each endless fall,
the shimmering light of each ascent.
So many are alive who don't seem to care.
Casual, easy, they move in the world
as though untouched.
But you take pleasure in the faces
of those who know they thirst.
You cherish those
who grip you for survival.
You are not dead yet, it's not too late
to open your depths by plunging into them
and drink in the life
that reveals itself quietly there.

Thirst. Light and darkness. Diving into depths. Drinking in life. Water.

“Hi my name is Rainer Maria Rilke and I’d just like to say: You are not dead yet, and it is not too late to dive into your increasing depths and drink in the life that reveals itself quietly there.”

*pauses for effect* *drops mic*

Published, Cancer Planet, Expectations and My Precioussss

Hello hello hello. NEWS FLASH I have good things to report after a long spell of not-as-good things.

I have the pleasure of being published by elephant journal again, and you can find the article here. Feel free to read it and pass it along to anyone who you'd think would appreciate it. The first time I was published by elephant journal was back in 2014, and this new article (like the first) is an adapted excerpt from this blog. The original post was written at my one year post-transplant anniversary. This article, To the Girl in the Waiting Room, holds close many of those same words- but I've re-written it a bit from the perspective of my current self: a little over two years out.

With another year under my belt, I was...well, not surprised really, to have a lot in common with the one year old me. I'm still struggling with a lot of the same things. Depression, frustration, etc. What I didn't really expound on in the post (both the original and in the new version) is the real let-down of being "one year out" (now "two years out") and having your expectations of where you should be crushed to pulp. I mean, the sentiment is there I think, as it does have a lot to do with depression and I believe it to be a pretty common feeling among cancer patients. Or anyone, really. We have expectations for ourselves: where we will be, what we will have, what we'll be doing... We have expectations for other people: what they'll do, how they'll treat us, how they'll react to us or a situation. And when the reality sets in and those expectations are not met, it can be crushing. Sometimes its a close miss, other times it's like you're on a different planet. So here I am on Cancer Planet. Yeah...Not the planet I was expecting to be on at 27, definitely not the one I thought I'd be circling the sun on for the last two and a half years. But even on your planet, Cancer Planet not excluded, you develop expectations of how this will go, where you'll be in some amount of time, etc. ...And then a giant meteor comes hurling out of nowhere and there's no Bruce Willis to save you.

Expectations are faulty: when they are unmet, they cause animosity in relationships, they cause self-doubt, fear, depression. And it's not like we can always help it either. So many of our expectations are subconscious, and sometimes they operate entirely in that realm: the subconscious mind builds these expectations, the expectations are not met, and then we're angry, frustrated, sad, upset, pick your adjective, and we may not even realize why.

I've been working to try to peel away my own layers in this respect: to have a deeper understanding of my own emotions in all situations in which I find myself. Sometimes it's difficult to understand- why am I feeling anxious? Why am I having a mental breakdown right now? Why am I angry? It's not always (ha-ha, almost never. Let's be real.) a rational one-to-one ratio of symbolism or set of chain reactions. But I am really trying to 'unpack' as they say, my emotions and try to get to the root source of them. Why am I anxious? I may not be able to go through this mental game while I'm having a panic attack- but maybe after it's over I'll think back and see if I can figure out a trigger, whether exterior or interior, that may have set it off. When I'm angry or frustrated (again, maybe not so much in the moment...work is work is working on it): what is this really about, under the surface? What is the expectation that is not being met? And what can I do about it?

My mother, in her great wisdom, told me long ago that almost every relational problem (people interacting with people: it can be corrosive!) stem from unmet expectations. I have discovered time and time again that this is very true. Whether or not those expectations were conscious, unconscious, rational or irrational... When they are not met, we respond with a negative emotion (again, pick your adjective). And I think, to dig even deeper into this, these problems really come from the fact that we are individuals. We are intrinsically different from each other. There is NO ONE like you. Not one other person who is like you in the entire world. One of my favorite quotes from Carl Sagan (of which there are many) is this:

"If a human disagrees with you, let him live. In a hundred billion galaxies, you will not find another."

And this gets at a True thing: each person, with their eccentricities and flaws, is singular. And I think if we really take this idea and honestly hold it in our lives: we will be overcome with awe. Human beings are incredible. They are also incredibly complicated, and our emotions get more complex as we mature and are able to simultaneously exhibit multiple deep-seeded emotions at once. It's a really weird and often irritating thing that we do.

So, to backtrack here a bit after all that rambling- I'm trying to understand and place myself as a part of this Awe. I disagree with myself all the time. "C'mon body, you stupid stupid lump!" "Seriously, brain? You wanna go there right now?" *insert panic attack* "Are you kidding, muscles? How can you cause so much--AHHHHHHH" (muscle spasm, tears, anguish.)

But I'm gonna let me live. Because in a hundred billion galaxies I will not find another.

This is not meant to appear or manifest as self-love to the point of self-worship. I suppose there's people who struggle with that *cough-Trump-cough* and that's a different thing. I'm talking about the self-hatred that exists within so many. We need to view ourselves and each other as innately precious and individual. And we need to take the time to honor that preciousness by trying to understand ourselves and others better. Our true motives, even if the result is flawed. After the panic or anger or embarrassment subsides, to take a minute to figure out the under-workings going on there. And perhaps, with enough practice, to be able to do this sort of mental exercise in the midst of difficulty: to see ourselves as precious, as the other person (if another is involved) as precious, and act accordingly. To take care of what is precious.

So here's to you, My Precioussss.

No but really.

In other news, anti-depressants can really work. I started a new one on top of the one I was already taking, and it is helping a great deal. I am very pleased to to say so. After a very long time of a hard time, it's nice to have a more steady emotional state. At least, without the increasing depths of the low times. Those haven't been back for a couple weeks.

And I'm going after my goals. I'm writing more, again, as I'd hoped I would. I'm exercising (AKA KICKING MY ASS INTO GEAR OMG) and building muscle and increasing my flexibility. Every morning I wake up (IDK how long this will last; I hope a long time!) and I think: NO STRINGS ON ME. Going after my goals like a mofo. YOU HEAR DAT EXPECTATIONS? But I also know it won't be a constant happy road. I'll hit bumps, plateaus and valleys like anyone else. But I'll let me live. My Precious.

Day 728: Recovery: Still [BLEEPING] hard: Opiates, Withdrawal, etc.

There's been lots of good updates for me, recently. I often feel motivated to take charge of my life again, something that was taken away from me for a long time. But also I need to be real here. Recovery takes a freaking long ass time and I am so sick of it. For godssakes I was SICK for a shorter amount of time than it's taking to recover. It's nuts. I feel like I should have bounced back by now. But I'm just not. there. yet. omg.

My mom told me a few mornings ago over the phone: I may not be fighting for my life anymore- as in, trying to not die, which I was for a very long time. But that I'm still fighting for my Life; to get my Life back, to make my Life worth living, to convince the demons who reside in me that I am worth keeping around, that Life hasn't passed me by, that I'm not years behind and stuck in a rut of shit.

Some days are really good. I feel good, I accomplish things and feel like I'm making progress. Lots of people ask me how I'm doing health-wise. And I just don't know what to say right now. Usually I feel obligated to say I'm doing well- because I don't have cancer any more. Praise Whomever. Community swells at trauma; in a beautiful way, a stunning way. Just a few nights ago I did an impromptu reading of a portion of this blog- the prose poem stream of consciousness thing that I wrote the night after the Bash Leukemia Bash in 2013. That night blew my mind into a trance-state of being, and what I wrote, I wrote with a constant flow, I did not edit and did not re-read it until the next morning. The evening was... beyond words, but I tried in the only way I knew how. I wanted to capture it, bottle it up, for days like this.

But the truth is, it's difficult, impossible even, for a community to stay that close to you for as long as this is taking, and/or for them to know that the recovery is longer than you would think, and that recovery is sometimes even harder than dealing with the daily threat between life and death. Because when you're there in the thick of it, you are just making it by, and there's not a ton of time in your energy-store to spend in darkness. It was too fast and you barely kept up. At least, that was my experience. I needed to be positive and make jokes and dance as much as possible. It didn't feel like an option to feel sorry for myself. I can't really explain myself in those initial months- it's just how I had to deal with these life-changing events. I'm not saying this is the best way to cope, it was just my way. I had my moments of terror, even then, of course- Death was sitting next to me, and I couldn't ignore him, especially in my month-long stays in the White Box of Doom.

This week has been a hard one. I've attempted and failed to get myself to two different doctor appointments this week. I went on a long walk with the sweet dog I'm watching, and it did help a bit. But the symptoms I am dealing with these days are sometimes more than I feel like I can take. These days, I wake up starting around 3am (or earlier) with extreme muscle spasms in my legs. I have to quickly get out of my bed as fast I can to try to stand on my crippling legs and feet, trying to just breathe, waiting until the spasm is over; somewhere between 30 seconds to a minute, sometimes longer. If that doesn't sound long to you, it is when it's excruciating pain you're dealing with. It is exhausting. I am so tired because my sleep is so disturbed, and I'm angry that my body is doing this to me. The doctors can't figure out why it's happening. GvHD? Malnutrition? Dehydration? Some other unknown cause? All of the above? I usually try and pull myself back into my bed with just my (tiny) arms, trying to not use my leg muscles so I don't trigger another one. And then cycle starts again, somewhere between 30 min to an hour later.  And I often just cry, head flat on the mattress trying to breathe, in my annoying hot-headed-burning-eyes tear-less way, until I can crawl back into my bed. These spasms are not messing around. It's truly grueling. I am totally at the mercy of these things. I'm confused that this can even happen when I have no muscles?! How can my non-existent muscles tighten so much it feels like my bones are breaking? And it happens in my hands, too-- usually if I've been using them during the day (oh, why not just NOT USE MY HANDS, HUH?); and sometimes it looks weirdo, hands contorting at weird angles and pain pain pain. But sometimes it looks like nothing is happening, except for my veins bulging, but the inside of my hand feels like the bones are being crushed. Cue crying from pain. And sometimes I just cry in my bed, at all hours. It makes my days short because I sometimes can't get out of bed until the afternoon. And it makes me feel just like a pill, instead of making me better, I'm making me ill. (thx, P!ink for your poignant lyrics)

This is not a great thing to report on, I'm not thrilled to be writing that I cry alone in my bed almost every day. It makes me feel like a failure, to be literally under two weeks away from two years since transplant, and sometimes I feel so stuck, so at the mercy of my body that just seems like it wants to hurt me, still.

I also have been dealing with something else that isn't pretty at all, but is extremely real and I think it's important to talk about. I guess. Oh God, okay.  I am addicted to opiates. I am addicted to morphine. And I f*cking hate it. I hate it so much. I don't want to be addicted to anything, never have had any interest in drugs, but I now see how any person, no matter who, can be addicted to drugs; so fast, so under the radar until it's too late. It's not the kind of addiction where I am craving it because I want it. It's the kind of addiction where if I miss a dose, I am in hell. I've been reading up on opiate addiction and withdrawal, and the symptoms vary from person to person, but my big ones are: terrible body aches, restlessness, the confusing feeling of being cold and hot at the same time, and an over all general SHITTY feeling that is hard to describe. Your body just...hurts. It's usually the worst in the morning (yay mornings forever) and at night (yay in-between those two times! Which isn't very long considering I still need a million hours of sleep and sometimes have to force myself to get out of bed at noon). Sometimes, I know that I just need to take my medicine and I'll feel better, but the aches and restlessness have me writhing in my bed for sometimes hours. I've also experienced a severe loss of appetite, and have lost so much weight that I am basically a skeleton. I am trying to gain weight, but it is harder than I could have ever imagined. It's difficult to watch my body whither away, again.

It's frustrating to have this addiction. I was first made aware of it last November, when I went to a DFCI Survivorship Clinic, where you get other check-ups besides just cancer ones: dermatology, dentist, eye exams, nutrition, etc. I forget which appointment it was in, but we were going through the (LONG) list of medications that I was taking (and still taking now...fix it jesus), and when we came to the MS Contin (12 hour slow-release morphine), the doctor said something like: "Wait, you're still on morphine? Why are you still on morphine?" ...It put me on the defensive, like, it was not right to still be on it and also my fault that I was still taking it, and I had to say something like, "I'm still really dealing with a lot of bone pain"--which was true, but it started me thinking...

Whenever I missed a dose of the morphine (which was fairly often because the paper script- which you need a physical copy of for controlled narcotics-was always sent to the wrong address, sent late, or WHATEVER but this happened a lot. ugh.) I would go through a mini hell: sometimes the shakes, body aches, overwhelming sense of shitty, hot/cold, quick deep hole of depression and fatigue. I started to wonder if the symptoms I was experiencing was the pain I was treating with the meds, or if it was just withdrawal from the meds. It was hard to tell, but I started to feel like it was the latter. And this was scary.

I hate to use the word negligence, because my doctors have done an amazing job. I'm not dead. As my doctor reminded me recently, shaking his head at my now day-to-day symptoms--which he (depressingly) seemed to deem unworthy of his time to listen to because: "Well, you don't have cancer right now, and CMML is a very hard cancer to treat. We're lucky that the treatment seems to be working so far. It hasn't come back yet." ...UM CUE MINI FREAK-OUT. Hasn't come back YET? He kept saying over and over CMML is a very very hard cancer to treat...UM "seems to be working?" "SO FAR?!?" "It hasn't come back YET??!?!??" I was like, are you kidding me??! I thought we went into this confidently! I felt betrayed and suddenly the terror crept up again. What if it comes back. He seemed to suggest the likelihood of its returning. I had a bad day, that day, too- after that. But this is besides my point here. Basically, I've decided that I can't spend my time fearing that cancer will come back. I just can't. Because my life would be consumed and I don't want that consuming my life.

Back from the digression: I don't want to use the word negligence, because it seems really negative. But the honest truth is, NO ONE was monitoring me and my meds (read: addictive drug-use). I am peeved that I had to be the one to sheepishly bring it up finally in a check up "Uhh, um. I think, maybe, that I am experiencing...withdrawal symptoms instead of pain symptoms when I miss a dose of the morphine." And my nurse's response was "okay, let's figure it out" which was great but WHY DID I HAVE TO BRING IT UP? Why was I the one to be like.... ok now after taking morphine twice a day for two years, maybe I'M ADDICTED AH PLEASE HELP. I am not a person with an addictive personality, and I have a pretty strong will. So I think I will be able to get off of this drug. But it was recently brought to my attention that the US, and Massachusetts (IN PARTICULAR?!?) is dealing with opiate addictions. I can't help but make a very uneducated guess at the correlation of the healthcare hub of MA and the hub of OPIATE ADDICTION. Seriously, guys, if I wanted to, I could just keep asking for refills and I could get into this really bad. I'm talking, serious. I could get into a real drug habit, which is NOT something I want to do, but I have immense empathy for people who do. Especially when it starts out as a prescription for pain for one thing or another. And the longer you take an opiate, the more you require because your body becomes used to it. This leads to Heroin, guys, the big papa opiate. I see now so much more clearly than I ever could have before: drug addiction is 1) no joke 2) way too easy 3) can happen to ANYONE. Me, Bekah Jordan, addicted to opiates. I am NOT the "type" of person to be into drugs. But it happened to me. There is no "type" of person. It can happen to anyone.

And it pisses me off that it happened to me, and that it happens to a lot of people. A lot of people may not be as aware, or just fall into it-- and before you know it, they've lost their family, all their friends, living on the streets doing heroin. It's NOT a "type" of person. I can't stress that enough. And I think a lot of leaders look at the "opiate problem" and the "homeless problem" and are scratching their heads. I'm like, DUH. I could be one of them, if I let myself. I don't want to let myself, but maybe I have a stronger will-power about this than some other people. The bottom line is (in my opinion) is that doctors should be MONITORING their patients, especially those who are taking narcotics regularly. MAKE SURE THEY ARE SAFE. MAKE SURE THEY DON'T FALL OFF A NARCOTIC CLIFF.

I can't say that my eventual addiction to morphine was total negligence of my medical team. I think it is often hard (for anyone, professionals included) to determine if pain is pain or if pain is withdrawal. But they should be checking up on it, and patients shouldn't have to be the ones after two years to be like...um, I think I'm addicted? It's scary. God I hate it.

In sort-of goodish news, I've recently met with a nutritionist and a doctor in palliative care (pain/symptom management), and we've come up with some plans: to get my appetite and weight back, and to slowly get off morphine. I just have to put it into practice, which I am starting to do. So, hurrah.

To add to this hilarious daily party, I'm also dealing with Fun Fun Anxiety. Haven't heard of Fun Fun Anxiety? Oh, it's a real blast. As in, it hits you so fast that you are blasted into hyperventilation or crippling despair. I really haven't ever dealt with anxiety much before my diagnosis; and even for a while now. But it's creeping up again, for some reason; and as always, when you least expect it. Something triggers it and off we go to the races. Sometimes it's hyperventilating and overwhelming fear that I can't keep my head above. Sometimes it's triggered and I shut down like an unplugged machine, into a paralysis and mental depression that takes over whatever I was just doing. I sink down pretty fast. Some traumatic things have happened to me and to people I care about recently, and I know that is contributing.

I don't know exactly how to wrap this one up, guys. Just layin it own like it is. Terror.
I'm letting it happen to me, while also trying to see the beauty here too--in between episodes of crippling pain or anxiety or GD withdrawal symptoms. Good coffee. It still being shorts weather in September. Wanting to bake again, and doing it. The sweet dog who is my constant companion these days, who sneezes a lot. Hanging out with the sweetest five-year-old hilarious nephew you've ever seen and reading books about dinosaurs outside the library. The skylights above me right now, displaying the clear blue sky. Scarf dancing with my little kids in theatre class. New socks. My hair can make a tiny tiny ponytail.

love. and love and love and love and AHH,
B

Day 365: to the girl in the waiting room

Twelve days after my transplant, after I got out of the hospital and was in for my first weekly check-up, I was sitting in the 8th floor waiting room, infusion side. My parents and sister were there. A lean and pretty girl was sitting reading across from us. She had a short dark pixie cut and adorable clothes, and honestly except for her bracelet I don't think I would have known she was a patient. She sent her husband out to get some Starbucks, and I caught the front of her book: Anne Lamott. I was actually feeling pretty good that day, considering. I guess I was just so happy to be finally out of the white box that I'd spent the past two months in, and my throat sores had subsided considerably. I told her I loved Anne Lamott-- and we got to chatting. She told me she was in for her year check-up, post-transplant. I couldn't believe my eyes. She looked so good. She told me about her class (she's a middle school teacher) and that sometimes the kids ask her about the scars on her chest. She laughed. She told me that I looked pretty good for being day 12; that she was still in an Ativan haze around then. She said "It gets a lot worse before it gets better. But it is so worth it. Keep going, soul sister."

And again, I am reminded of Rilke. How could she have possibly known? Let everything happen to you: beauty and terror. Just keep going. 

It meant so much to me (more than I even knew at the time) to see her, looking so healthy and happy and strong, a year away from where I was. At the time, I couldn't imagine myself being in her place. I couldn't imagine it. I couldn't see outside of where I was. I was still so blown over, so caught up in dealing with symptoms of this deadly treatment that I couldn't imagine a time when cancer wouldn't be my life. I hadn't even really started the arduous journey of dealing with everything that cancer disrupts or takes away. I felt it's immediate stoppage, of course: I was ripped out of my life and put on a single-lane fast track labeled in big letters CANCER. It changed everything. And then later, when the solitude and mental exhaustion took its hold, I couldn’t make jokes anymore and winter and depression drove me close to losing my mind or taking my own life--I couldn't see outside of it. There were nights I didn't think I would make it, because I would cry myself to death. 

And yet. I am here. Somehow I have survived this long, trudged this far into the journey. I have a lot of people to thank for that. Some people would say I'm so close that I might as well finish this. I can hardly grasp that I am one year out. It doesn't feel like something that will end. It feels like it can’t end. And in some ways, I don't want it to--what I mean is, some of the changes I don't want to lose sight of. I don’t want to forget how I feel about living now, right now at least. After really experiencing fragility, and beauty and terror all together...it makes me want to live differently. It’s a part of me, and a part of my story now, and I am different. I knew this would change me; and I’m still learning what that means, and figuring out who I am now. 

Today I’m trying to claim that bravery again, finding ways to celebrate even if I don’t feel like doing it 100%. Finding way to be thankful, and trying to thank the people responsible for my still being here (the list is long). Because cancer has changed me. For one, it makes me not want to be afraid of dumb shit that’s not scary. Life is so temporary. Ask for his number! Fly to Edinburgh! Start a new job! Open a café! Apologize! Forgive! Take risks! Ask questions! Do things! Choose Freedom! Choose Love!

The effects of cancer have outlived the cancer. And that is a mixed bag, I must say. I am not whole yet. There are effects that hurt; really hurt. I am still climbing out of this emotional wreckage, let alone the physical wreckage that is my now weird body. But I am--today, in this moment--trying to focus on the constructive effects in my life: the ways in which I am changed for the better. I am lucky to be able to do that right now, and perhaps tomorrow will not even look quite as bright. But life won’t stop being hard after this is over. Challenges will always arise, and life will seep down to the bare mundane tasks if I let it. I need to keep finding ways to live and love better. I have to trust that time heals, that days will go by, and that I have a thousand choices in each one of them. 

To the girl in the waiting room: thank you for saying that to me.

And to the other girl in the waiting room: you did it. One year down. One hundred more to go.

Day 362: I'll have the Year, with a side of Terror please

This Friday marks one year since I lay in a feeble haze in the white box of doom and watched a cup and a half of red stem cells drip into my body. I feel that this anniversary should be a triumphant one; where I raise and wave my cancer-free flag, celebrating all of the accomplishments of this past year.

But to tell you the truth, I do not feel triumphant. I do not feel victorious. I don't feel brave. I feel like dissolving and disappearing forever. I thought I would feel different than this. But so many hard things have happened, some things that I can’t even write about. I try to reflect on this past year and honestly, it just really depresses me. The negative are overpowering the good right now. I’ve even tried making a list of the things I have accomplished. It’s not really helping.

Anniversaries are strange. They are a day like any other, going by. But they hold something else inside them—expectations, desires, longings. In some ways it feels like the day should be able to pass without a huge hullabaloo about it. But I feel it creeping closer, and I feel the weight of everything that this anniversary holds: this year, everything I have somehow endured, the physical battle and the emotional duress, the things I have lost... It doesn’t feel positive. I don’t feel like celebrating. This date represents and holds inside of it this entire year, and it’s really heavy.

I probably should try to not pour all of this year into a single day; but that seems hard too. I want to be the person I was—joyful, bursting to see the sun, dancing in my hospital gown. That part of me feels spent, used up. The world looks different. I feel like Life showed me its really grueling shit and I’m having a hard time loving it afterward. I don’t feel a mantra or a life lesson. Except that life actually tears people down. And it’s really hard to find a way to get back up. I’m really trying. I am really searching for things that make me feel alive again. I’ve been thinking about Self Care and trying to figure out the tools I can use to make myself happier. I make lists. I go for walks. I try to schedule things and time with people. I got a job that starts in a few weeks. I’m trying to do theatre. I bake a lot. I clean the house a lot.  I’m pickling and canning. I’m working on planning a workshop for DFCI. I’ve started doing more embroidery things, though my hands still don’t always function properly with those fine motor skills.

I’m trying to believe that I am still in process. It’s hard when now I’m getting back into the world, and people expect me to be like, “back” from cancer as if it was some horrible vacation and it’s over now. It’s not over. It’s not over. I feel the effects of cancer in a new way now than I did before, when I was just trying to not die. It’s not just a little blip of life that I missed. The world changed while I was in quarantine. Of course it did, I missed an ENTIRE YEAR. Everyone had babies. And that’s absolutely fabulous. I’m really psyched to be meeting all of the babies. It’s just one more thing that shifted and moved on while I was “away”. But I wasn’t off having an experience in another country or choosing the monastic life. I was literally in Salem MA this whole time, in my little apartment. For an entire year.

I feel robbed. And I don’t feel okay about it. I’m angry. Really, really angry in a way that I wasn’t before, even when I got diagnosed. Back then it was survival mode and I was like “I’m gonna get this shit done, BRB” and later it was such a physical challenge I didn’t have much time for anything else--and maybe I deal better with physical pain. Or maybe it has just worn me down to this place where I can’t seem to find the joy that I had. I just feel angry. And really sad.

I don’t know what to do. All I can seem to muster is to try and take stock every day individually. How do I feel, today? I am feeling good, today. I am doing well, today. I am feeling lonely, today. I am empty, today. I am sad, today. I am angry, today. I am ok, today. I am here, today. I hope that enough days will go by and this thing, whatever the hell it is, will eventually lift.



I am suddenly reminded of Rilke's words. I haven't thought of this in a while, and it literally just came wafting into my mind.

Let everything happen to you: beauty and terror. Just keep going.

So this is terror. Okay. Just keep going.

Day 303: 10 months, and all the things

Hello and welcome to 10 months since transplant.

I can hardly believe I'm even typing that number: over 300 days. 10 months. Ten months. 2 more months will be a year.

Fortunately, I haven't been writing as much here because I've been busy living my life. Again, finally, finally. I am not home-free yet: I can't start work until October; I'm still on anti-rejection meds, prednisone and tons of antibiotics, and even come one year on Sept 26 it's another 4 years until I am considered "cured" of Leukemia. But I am now taking stock of my life as it is right now-- and compared to what I was four months ago, it's hard to believe that things have changed so much. I am here.

I have started going out to public spaces (if they aren't too crowded), cafes, restaurants, friends' houses, I shop for my own groceries. I have been frequenting my favorite bakery, and though I am sort-of cheating when I order their amazing smoked salmon sandwich (it has raw things on it, which is not exactly "kosher" for me right now), it is so worth it. (don't worry mom, I've only gotten it a couple times; I think my odds are still good of not getting a bad sprout)

My taste is back to normal (though there are some things that I do not like anymore!? how strange), the body aches are diminishing (great thanks to my massage therapist, Bambi. And prednisone.) My hair is coming in, very very curly, like never before! Cue the BRILLO PAD

That photo is from a couple weeks ago. Two days ago I shaved it all off again, in hopes that it will start to thicken up more. Here's one from today. buh-bye baby fuzz, GO ARMY

In other news, my theatre company: the 5th wall, put up an original production last weekend: The Quiet Room. (aaand, shameless plug for our website. For pics and more info about us: the5thwall.org) We wrote the script over a few months at the beginning of the year, auditioned and cast the show with both known and new faces, and all beautiful minds, and rehearsed hard for two months. It was an amazing experience the whole way through: the ups, the downs, the grueling heat, the extreme fears and anxieties, the unsurmountable joy… And being a part of this show was the most normal life activity for me since I was diagnosed. When I am at rehearsals, I feel alive. Completely in my element. I truly forget all this shit and just do what I do best (sometimes to the detriment of my health; which is why I love my friends even more for always pointing me to my water bottle). I feel very lucky to have found something that I am both good at and also enjoy; and can also afford to do for the time being. It is not a perfect model: there are most definitely nights when I feel so lost, like the path is blocked: creatively or physically or emotionally. But it is the striving through these crazy obstacles that make it important, make it what I love. A cliche: but it is a labor of love. Through and through. And the messy nature of theatre is one of its most beautiful qualities. It gets directly at the immediate heart of life, relationships, the self, the other, love, struggle, trauma, perseverance, love, love, LOVE-- even in its very method of creation. Abraham Heschel said in an interview a few weeks before his parting from this world: "Above all, remember that you must build your life as if it were a work of art." There are a couple of interpretations of this, but the one I find to be most meaningful is this: build your life in the same way that you build a work of art: Through the mess and confusion, continue to reach for clarity, beauty, honesty, truth.

This show and this company is life-affirming for me. It reminds me why I want to get through this...tough patch. Not for any one person, not for a single one thing or one relationship, but because there is clarity, beauty, honesty and truth. I have to live for that, for myself, and for everything that is bigger than me. This is something that I have been struggling with; in spite of how strong I felt for so many months after being diagnosed. I am learning about myself and how I deal with things and people and life struggles. Trauma does that, I think. It forces you to deal with things immediately, and then you are left thinking about yourself in relation to it in the aftermath. I have learned that I am a fire-fighter. Trauma hits, and I go into survival mode: Get it done. I make jokes to get myself through, I do whatever it takes to get through. And then, as I have seen and experienced and am now realizing: something happens when the trauma is long-term. I start to lose my footing. I start to lose my drive. I guess probably anyone would, I don't really fault myself for this. And of course, my situation is extremely concentrated: spending hours alone, often in physical and/or emotional agony over the winter is not many people's experience. However, somehow I think this can be invisible-- even in people we see every day.

I am thinking a lot about how I relate to people, the mechanisms that I use to deal with things, especially to protect myself. It would be foolish for me to believe that I don't use mechanisms; we all use them-- learned from those who came before us, or in reaction to those who came before us. No one is exempt. In a way, it allows me to be more forgiving of myself and of others, for all of the folly and helpless failings. In the words of a character from The Quiet Room: "We find ourselves here, among them all, these unsolvable puzzles of things and people, just being." Just being. Trying to protect ourselves, experimenting with life and choices and our bodies and minds and other people and experiencing the vast spectrum and gamut of human emotions all at the same time, all of the time. It's messy. It's theatre.


I will take the sun in my mouth
and leap into the ripe air
Alive
with closed eyes
to dash against darkness.

-- ee cummings

Day 260: power pants vs. cancer pants

Today I had my first rounds of immunizations, as I am “starting over” you could say, with my immune system and need all my shots again. I thought perhaps it was a cocktail shot with the few that I was scheduled to receive today. NOPE. Four separate shots, two in each arm. I hate shots. I hate needles. However, all the prodding and IVs and bone marrow biopsies and LPs that have happened to me have at least helped a little in the anxiety department. I know, rationally, that I will make it through the shot. So I focus on breathing and relaxing, and it also helps to tell the nurse to push it in slowly. Perhaps the worst part of shots is that icy cold WHOOSH of the stuff flying in. So, the slower the better; and if I can’t feel the needle, it’s not as bad. It also helps to have a heated massage (let’s not get carried away here, it vibrates on two levels) chair to sit in, which they have at Dana Farber. My arms are a little sore, but it’s not too bad. Immunizations round 1 complete! #boombaby In other news, my blood/kidney/liver numbers look great, and my chimerism (the percentage of my cells to percentage of donor cells) is holding at 100% donor. #BOOMBABY

Then on the way home from Boston, in true Friday the thirteenth fashion, my car died. It was the second time this week—and thankfully in the CVS drive-through (instead of THE ROAD), but still. Really though? After finagling and praying and scraping with a wire brush, the jumper cables finally worked and I drove straight to the mechanic and got a new battery. As I sat in the little waiting room at the auto place, masked and gloved, I spoke with a woman whose tire just blew up. We chuckled about car troubles. I explained that I had a stem cell transplant, which is why I was all covered up. It made me realize that I miss being in the world, meeting new people, and even those silly and seemingly meaningless brief conversations that let you peep for a second into a strangers’ life. My nurse told me today that I can go to the grocery store at low-traffic hours, and that in general, the strict rules are starting to relax: as long as I still stay away from crowds, dirt, and mildew-y basements. I guess this calls for 9:30pm ice cream runs. I’m glad to be able to start doing things again, mentally I’m trudging through. I feel I have lost so much of the strength I had to get through this. It’s just,…a long time. It’s a lot to ask of a person. I know it’s what I need to do in order to then live the rest of my life, but sometimes it doesn’t seem like the end is in sight. I feel alone. I’ve been searching for tools to help me mentally pull through. I’m trying to reach out to people. I’m starting a new theatre project with my company, and our website will be live in a few days. And thankfully, on cue today, a tool—however small, however silly—arrived in the mail.

After the mechanic, I came home to find a package that I’ve been waiting for. Meet my Power Pants, the foil to my Cancer Pants: helping me conquer each dreary day with their stripes, every lonely long hour with their stretchiness, and my sadness with their general badassery.

ONE PANT TO RULE THEM ALL. Cancer ain't got nothin on you…
As my mom said, "must be your donor showing" (the Knight may live in the UK)

pardon me while I go shake my Brit-striped booty to some Bey—

Day 247: surprise and thanks, for you and the Greek Goddess

The world is so beautiful, so new, and so full of surprise. I'm currently staying at my parents' place near the Cape, and even though the weather has been pretty windy and cool, it's warm in the sun. This morning, for the first time, I saw a baltimore oriole outside my window (the bird, not the sports team…). Anne of Green Gables may be right that each day is new with no mistakes in it; but it also is new with surprises. I'm not what you would call a bird watcher, but this beauty was fully worth my praise; a brilliant mac-n-cheese tummy flitting between leaves of the japanese maple. 

And more surprises. Over the past few months, a friend of mine has been organizing a fundraiser “Café2Café” bike ride on the North Shore. The 70+ mile ride was today. Last year the donated proceeds went to a women's house on the North Shore for survivors of human trafficking. This year, the money was raised for living expenses for my sister and me. They raised almost $1500. I am again, and again, and again, floored by the love of people. I have never felt incredibly great about accepting monetary gifts, so I try to see this as the outpouring of love that it is. People are beautiful, and so good. The right words are hard to find to thank you all for your support, of all kinds. This has been the hardest, most physically and emotionally challenging year of my life. There were times I wasn't sure I could make it through, or was convinced that I didn't want to. Meds talking or not, there have been really dark moments over this past year. I've seen the bottom of the pit; I've dwelt there and felt the effects of that place on my psyche. Any plans I thought I had were utterly disrupted or severely re-routed beyond recognition. I've watched my body wither away and change shapes and colors, aching every moment as the strongest poison washed away my immune system. The months that followed were spent fearful and weak; sleeping most of the days, waiting for my body to miraculously start healing itself. It didn't seem possible that I’d ever come out of it, that I’d make it through those long months.

But it's happening. Right now. The distance traversed is gigantic. I'm not as dependent on pain pills anymore, I don't sleep nearly as much (though still a lot). I feel energy coming back to me, slowly--but nonetheless, returning. There were so many days and hours I felt I would never reach this point; and I can't believe I'm saying this. I am here. In this place, at this time, alive. Growing, healing, transforming. 

Lately I’ve been feeling negative towards my body for its lack of muscle and flexibility, and for general flabbiness. I am still blotchy, and I still have dark circles around my eyes, baby hair, and scars on my chest. But I am reminded today to look past these trifling problems, and pay homage to the great strength that my body has shown through the tribulations it has endured. My body has served me well, and I need to celebrate it. You done good, body! You've shielded me from many side effects, you've been beaten down: first by cancer and then by the near-lethal treatment--and remained even still. You’ve travelled noxious ground victoriously, voyaged dangerously close to death and pulled through, you Greek Goddess! You are worthy of praise and adoration! I will constantly fight the negative feelings and hold you in awe.

In those moments of doubt, as I’m sure they won’t ever leave me for good: when I’m not sure I want to do this anymore, struggle longer, wait for an elusive end to the trial—I must recall these moments of true surprise. I’ve found myself almost nine months out from my transplant, and a year out from the beginning of this saga. What surprise! I wasn’t sure how I could do it, how I could survive even another day of the solitude and depression and fear. But I am here. Here, almost nine months out. Only four months left of this quarantine. I’ve gone so far into the forest that I’m now on my way out the other side. Eyes on the (sur)prize!

So, thank you to everyone who rode in the Café to Café ride, and to Patrick for organizing the whole event. You guys confound me in the best way. And thank you to the Greek Goddess. I literally wouldn’t be here, right here, without you.