Spaceship Coupe to Star Command: Requesting Early Launch

The real work begins. Monday brought the news that we will not be continuing with the current chemo regiment (the monthly 5-day hook-up with my BF Decitabine, whom I will hereafter refer to as BigDaddy), that the plan has shifted, and we’re starting it in a week. The nurse sort of mentioned this in passing “Heard about the great news—the donor—so obviously you know the plan has now changed we’ll be skipping BigDaddy* this week and starting induction chemo on Monday how are you.” Welcome to the comedy show where nothing’s made up and the points all matter. My eyes sort of started crying, suddenly, without my consent—as I told her that no, I did not know that the plan had changed and no, it was not obvious. I asked her to repeat it again, to explain exactly what the plan is now. (*didn’t actually say BigDaddy)

The News. Because they found a donor so quickly (it took under 2 months—most patients wait 2-3 months), the game plan has shifted. The bone marrow biopsy showed stability and little bit of improvement—but not good enough as prep for transplant. The original plan was to continue on BigD until a donor was found, and hopefully by then I would be in remission (ready for transplant). BigD hasn’t been doing the job quite as well as they’d hoped, and rather than continue and wait to see if things improve, it’s better to just pull out the stops and go for it. This is good news. We’re moving closer to getting this thing behind us. It’s just happening faster than I was originally preparing for.

The Plan. (I warn you that here’s where I get a bit more technical/boring. Alas, I have already had to explain it multiple times, so I might as well get it down in writing.) Monday I will begin induction chemo—this is to rid my body of all visible cancer cells (also known as remission). It’s…well, it’s rough stuff. The first week is 7 days of 24hr chemo drip, along with an additional 2-3 hour daily IV push. aka INTRAVENOUS COCKTAILS FOR A WEEK STRAIGHT, are you hearing this? Then I’ll be in recovery post-induction for what may be 6-8 weeks (my immune system will be very weak and risk of infection is high). I WILL be able to take visitors during this time (HOORAY BRING YOUR BODIES AND DANCE/sit/talk/read/wear masks with me). Then I’ll have a week off to come home I guess. After that, I’ll go back in for a week of pre-transplant chemo—ostensibly more intense than its close cousin, induction. Basically we’re sending in troops to search and destroy the immune system that took an evil turn (…HAL?). And then I get a day off. When my transplant doctor was explaining all of this to me a month ago, he said “…and then you’ll get a day off—” after which I chimed in a somewhat lackluster “to party!” while he said something else that sounded similar. “I’m sorry what--?” “To puke your brains out.” After that, we hang a comparatively anticlimactic IV bag of stem cells that are just, you know, gonna save my sorry puking ass. It’s the infantry, come to clean up whatever old immune system is left after the chemo soldiers. They call this my Re-birthday. The waiting game begins as the two sets of DNA duke it out (HAL, give up the ghost). I’ll be in the hospital under scrutiny/immuno-suppressants until blood counts return and they deem I am fit to leave; approx 4-6 weeks. Then of course I climb aboard Spaceship Coupe phase 2 to begin the year-long recovery and immune-system growth, yada yada, you’ll be hearing about it, and this is too long already.

Soon to embark on the craziest escapade of my life so far? Yes. Perhaps never to be surpassed in the crazy.

Operation Soak It All Up. So here I am, sitting in a wooden booth at my favorite bakery, savoring the lasting taste of sugar from my walnut sticky bun and coffee. It’s hard to not think that this is my last week of freedom. But my life will be changed forever once we start this thing. I mean, it’s already been altered—but now the real thing begins.

I consider myself lucky, though. Some people go in for routine blood work and end up in induction chemo that very day. I’ve had a few months to warm up to the idea of cancer (still lukewarm), and now I have a week to savor the deliciousness of my home and the outdoors and all the places I won’t be able to go for a while. I’m trying to make it full of good things, though I have found myself the past two days very unmotivated; even though I want to be filling my time actively, experiencing everything. I cannot deny, there is fear in me.

I am working on committing things to memory. The sun on my back and arms as I walk to the Laundromat. The smell of AJ King. That elderly woman’s platinum pink hair. Sitting and writing in a public place. The Bash on Saturday. Hannah’s song that is playing in my head. The painted chairs and upholstery and cushions, the Persian rugs and tapestries, the eclectic lamps and books and tables. Shel Silverstein. The multi-headed camping trip, Eric being buried in sand, What Not To Expose to Our Son. Carrot cake and climbing mountains. Bracing for the fall, the universe dividing. Rilke. Goodnight mush. A floppy crown, standing on chairs, a tiny narrator clearing her throat. The moon. Laughing. Crying. Covering my face. Listening. Loving. Overflowing.

It may be that when we no longer know what to

do

we have come to our real work,

and that when we no longer know which way to

go

we have come to our real journey.

The mind that is not baffled is not employed,

The impeded stream is the one that sings.

-Wendell Berry, “The Real Work” from Standing by Words

Star Command to Spaceship Coupe: Launch Status Granted.

among the roots and underground

i am overwhelmed. i am so overwhelmed that capitalizing sentences seems futile. i am operating basically and fully at the same time. i am overcome.

i cannot believe the things i have just witnessed--the love of a family that stretches wider than blood, deeper than anything i could have ever imagined for myself or any person. 

i have somewhat returned to my mishap of a room, after the single most flooring experience of my life. beyond a diagnosis. beyond fears of death. it dispels all these things. sitting in a room with these people, i was replaced by a cup overflowing. 

i am surrounded by beauty that i don't understand. i am filled with things i don't comprehend. i fill up, i spill over. i want to kiss the world on the mouth.

it seems wildly unfair to me that i should have this. it is too much for just a person. words are failures. awe, shock, wonder, amazement, beauty doesn't even begin to describe what i am currently experiencing. it is too much. it is too much.

i want of nothing.

it is holding me together, your love.

i feel the legs of our community like roots burrowing underground and covering a lot of land. we stretch out wide and fan ourselves and grasp the earth, holding the meaty silt and clay along the edges of the water table, sipping, climbing, crashing, spilling over rocks and boulders, strings of granite and quartz for miles. we do not tire, this is our purpose. we grow. we feed off the land, we drink the deep waters and refresh ourselves for our tumultuous journey. we struggle through sand and dry climate; we spit out seeds. we germinate after drought, we pop up here and there with tender shoots, we leave tubers and legumes in memory of times spent. displaying our delicate variegated leaf, we rest a ways next to rivers, dig deep under hills and grasses. we twine together to push through gravel, rustling the surface of pavement and cracking the calm exteriors of concrete. we cause tears and laughter, aches, scrapes, bruises and bones. we smile wide with our arms, jutting out and upward, wrapping, holding, loving--we climb beanstalks and houses, brick and shingle alike, we slip through open doors and cover closed ones. we listen with our eyes, see with our hands, and feel with our throats--vibrating a hum smallish yet rising. we endure. the damage we have seen is behind and beyond and overrun with us. we stampede with such force to reduce rock to rubble. we shake our fists at disbelief. we move for a light, we trace our waxy yucca fingers along the edges of the earth and delight in our reflection in the still pools. we feel the heat of the pods bursting, petals laughing, feet digging in and squirming. when pulled up, we gleefully shake off the chilled damp muck in summer, the cold evening dirt pressed in the space between our limbs. we are heat, we are cool, we are saturated by the sun. we are the kings and queens of the lithosphere, cracking codes and spanning ages, spilling pomegranate gems like it’s nothing, decorating the fields of our bodies with jewels and fine furs and loam, for the joy and delectation of herbivores who need us, sacrificing, seeding, replanting ourselves across the fields and under the strands of the willow tree. we sway in breezes and break up and move the earth, we squint our tender eyes at the low sun, we gladden with Spring and wait patiently in snow. we are the organic engine of Persephone, holding her fennel staff. we sisters brothers mothers aunts, tethered together, ornate, flushed, crackled brown purple blush. inch by inch we span the land, hand in hand, stretched, marred, tanned. we spurt up for no particular reason. we toil and gripe and develop small flowers. striped and spotted and varied in hue, we swell fruits at the end of our arms. we ripen. we praise the land. we laud the ants and worms. while bees carry out their sacred mission, our winged seeds catch the wind. 

cancer pants

On today’s episode of And Other Things That Have Now Become Weird: dating.

The self-sufficient feminist in me is balking right now, but I’m going to indulge the moment. I mean, I’m fine, I can get along, have for a while now. It just would have been nice, you know? Just one more thing that is now riotously weird. But my support system of family and friends is way better and more diverse and awesome than any boyfriend could ever be, maybe.

It’s just, before this whole shebang began, I had arrived in a place where I felt I could actually, safely, constructively handle the concept of a relationship. The Big Girl Bekah Pants had arrived (paid for via years of singledom) and I finally felt like a fairly solid, dateable human. But somewhere along the line there, the order got screwed up-- and instead of Big Girl Bekah Pants from the Dateable Summer Collection: I got Big Girl Bekah Pants, Cancer Collection. Cancer Pants. Real life sometimes hands you cancer pants.

Nobody wants this baggage, though. Granted, it’s a lot to ask. Get-to-know-you small talk? Hilarious. Soon I’ll lose my hair, and it’ll be impossible to not name that elephant.  I said it before I even heard Tig say it in her set…What, serious inquires only? I already dread any moment of talking about anything in my current life, because it’s all this. And I’m trying—really trying to think of other things, trying to imagine my life before or a future without. It’s pretty consuming right now. “What are you up to these days?” Cancer. Cancer is what I’m up to these days. I don’t really have anything else going on right now... Just these hideous pants, and maybe also I’ll put on this pair of taunting red shoes. 

I dream of the day this is not all-consuming, of not being the sick girl who can turn into the Debbie Downer of any gathering at nary a moment’s notice, of doing things other than laboring to schedule a wimpy life around doctor appointments. Perhaps the day is nigh. For now, a girl dancing in pants I will be.

well anyway, as a wise woman once asked and answered: who run the world? GIRLS.

tramp stamp

Today I had my second bone marrow biopsy- which, after the first one in May I thought to myself, oh my god, I just did that thing, hooray, never again.

As it turns out, (WARNING: wincing stomachs be wary) tapping a giant ass needle (an ass needle.) into my hip and sucking out the juices and a piece of bone is the only way to check on the factory and to see how the poison-ahem, chemo-is working. I imagine it as a communication system, obviously in the most meager way possible because I'm a child: like a giant paper towel tube that we hover next to Bone Marrow's ear and scare the living daylights out of him by whispering suddenly 'hows it going'. And then run him through a juicer and take some pulp back to the Queen.

We find out what the Queen says probably next week, hopefully good news: that the chemo is working and slowing any progression down, even maybe pushing me back toward CMML-1. I don't know if that even possible, but I imagine so because the difference (as I understand it) between type 1 and 2 are the percentages of blasts (bad cells) in the marrow. If all is going well, we're lowering the blast numbers. We're essentially ruining the insane party they've been setting up over the past year. BLAST! yell the blasts. Sorry I'm not sorry.

So now I have a new tramp stamp on the opposite hip, which looks a lot like my first one:

you're welcome.

It's a bit swollen and sore, but nothing too bad.

Today was hard, actually. I'm feeling a lot better now, but it began rough and remained rough through most of my appointments. I really never lose it, but today I cried in front of a lot of people. I cried getting my IV in and getting blood drawn (granted it took three solid tries to get it), I cried in the waiting room outside the financial office. I cried in the lady's office. It was weird, I can usually hold it together. Not that I mind crying really, I don't. But it was just another reminder of how uprooted I am feeling these days.

Maybe I was really nervous about the biopsy. It means a lot. We find out if it's working, or if we need to be more aggressive in treatment. It also hurts. Apparently though, the diagnostic biopsy can be a lot more painful (it was.) simply because there are just more cells crammed in there (refer to the year-long party planning from earlier), and getting them out can be more difficult. For reference, when I arrived at Brigham and Women's, my WBC (white blood cell count) was around 78,000. A normal human is around 10,000. I'm currently around 34,000. That's right folks, I am no normal human. I dance to the beat of my own drum. My own cancer drum.

I've been working on writing down an summary of the past two months, starting with going to the hospital for something else entirely and sort of by chance/luck/love discovering that I have a touch of the cancer. I haven't decided the best way to post the backstory, but perhaps soon. I know there are people who don't know the story and who may be interested. I'll try to make it funny.

In other news, I worked two full shifts and two partial ones this week. Feeling like a contributor; you're welcome world--or at least, residents of Beverly who lusted over iced mochas all day. You're grandest coffee desires are my command.


Today's daily math:
-3 a tired sad day to start
+1 zucchini bread for breakfast!
-1 dropping said zucchini bread on the way to the car
+5 not too much traffic
-15 veins are getting tired and it took 3 tries to get a stable IV.
+1 cool bruises
-20 crying in front of strangers/the world
+2 coffee
+25 great nurse
-10 great nurse stabbing me with the giant Ass Needle
-5 lots of traffic out of Boston/everyone driving like a tool in the 100 degrees/you in the pickup.
+100 Marie's back from Philly, I missed her a lot.

daily total: 80

thanks Rie, you saved the day.

thank you, I have cancer, how are you

I just finally listened to Tig Notaro's live set at Largo from last year. Tig goes on stage for her set after being diagnosed with breast cancer only a few days previous. All the old jokes are silly, irrelevant, hollow-- she finds herself unable to tell them, to talk about a bee passing her on the 405. So she talks about her cancer. I've been told numerous times to check it out. Well, I finally did. And. It is so true and hilarious and, my experience. I turned to my roommate as he sat down to listen to it with me, with tears brimming and yet deeply laughing. She outlines the last 4 months of her shit misfortune: a dangerous bacterial infection, the accidental passing of her mother, a break up, and the cake-winner: a cancer diagnosis. But her take on all of it is exactly what I love. It's how I view it, at least, how I try. There is comedy everywhere. "Thank you, I have cancer, how are you, hello" is how she begins her set, which seems minimally prepared: raw and uncouth and so deeply funny. I encourage you to listen to it. I found it for $5 on iTunes.
Do it.

to begin where I am

I suppose this could be a fruitful way to conduct myself; what with my newfound inordinate amounts of time spent alone and somewhat aimlessly. To be honest though, to catalog this experience seems a monster.  What to add from the past two months? Where to begin? Hey I'm Bekah, I'm 25, I have a weird leukemia--

I am reminded of the words from the attendant-spirit pen of Czeslaw Milosz, "to begin where I am". It is the title of a collection of essays concerning his life and also his witness of the events of twentieth century Europe. He begins the volume with the sentence "I am here." It does not explain anything. It gives no excuse. It doesn't have to be an eternal "here" or even an existential "here". It points to a moment of existence. Here. Right there. I like that. I feel that it is the best I can do.

Some days I feel like laughing the hell out of this thing, and believe you me: I am collecting cancer jokes for the comedy that I am writing/living (stay tuned). Some days I'm ready to just beat this thing, real quick-- brb just gotta beat cancer. Some days I look at my arms and legs and stomach veins in the mirror and wonder at its being trapped inside my body. Some days I can't seem to get out of bed, or my house, or read another damn page of some damn book because I'm tired of confinement, and I'm not even on real lock-down yet. And some days I feel content with the beauty of the world. All I can do is begin exactly where I am. I need to experience my life, as preciously as I can- but fully in the way that it comes to me. My mortality is staring me in the face. I do my best to stare back, to laugh and live and dance in spite of its ability to incite fear. But the reality is, this could kill me. Reading this, my loved ones may be thinking this is morbid and unhelpful. But I can't ignore it. Though I don't think it's helpful to dwell on the fact, I don't want to face all of the uncertainties of living and dying and beyond when suddenly faced with a bad probability. Right now the prognosis seems good. But we live upon an uncertainty, an unknown--and for me it feels all the more insubstantial and unalterable. There are steps to be taken, planets to align, things have to fall into place just so... One day at a time.

Perhaps tomorrow I will update and fill in more of the plan going forward. I will laugh more and joke and accept and cherish. Perhaps someday soon cancer will not be the raging and singular thought in my mind. I know I am more than this, little disease. But it's consuming and scary, some days more than others. Tomorrow and tomorrow and tomorrow. Today, these are my musings.

When this whole thing began two months ago, one of the very first things I thought of (and has carried me through times past already; and into the future, on and on forever amen) is another quote: this one from my brother Rilke (Book of Hours | 59). It breathes the same air as Milosz's bit.

Let everything happen to you: beauty and terror.
Just keep going. No feeling is final.