dance, dance, otherwise we are lost

I wish I could say that I’m sailing through this. But the truth is, I’m not. Every night is harder to get through, the minutes crawl, the bed is too warm, my body too creaky. Nights are the worst part of being here. It’s more and more difficult to fall and stay asleep. The panic that used to find its way if I woke up around 1 or 2 is creeping in earlier, now edging on closer to 8 or 9. It lasts until I somehow fall asleep. My dreams are nightmarish at best, or nothing at all. Last night I dreamt of getting woken up for vital signs. This happens in reality at least twice a night, so now it feels more like 4-5 times a night, thank you brain. My creativity for dreaming is blowing my mind right now, but please, hold your applause.

There’s also a lot of light pollution in here at night, from the nurses' computer screen and the IV pole thing and all the buildings outside my window. I can’t bring myself to close the blinds though, in the event that I may miss my few minutes of sunshine in the morning. I have about 20 degrees of sky between the buildings that offers a few sunbeams around 7am before disappearing behind the adjacent Brigham tower at 7:20. I wouldn’t trade those 20 minutes of sun for sleep. I’ve been clinging to those precious minutes. Unfortunately we’ve been having some lousy weather, so barely light grey mornings continue into dark grey afternoons until the cloud obscured sun gives up at last and I’m left with the blinking red lights atop buildings to warn low-flying aircrafts.

My bones ache. Joints, spine, fingers, hips, legs, all bones in general. This is a good thing, apparently. It means my bone marrow is expanding and reproducing cells. It’s what we need. In order to get out of here, I need my neutrophil/ANC (the infection-fighting white blood cell) count to be at least 500. On Wednesday I had zero. Thursday I had 12, yesterday I had 50. Today I have 80. I have great hopes for tomorrow; we’re holding another body powwow tonight to discuss the game plan for tomorrow and see if we can get above 120. I may be a dreamer, but I believe in this body, guys, cmon. Gimme your best, and I’ll see this thing through. They say it's only a few days now. I am happy at this prospect, elated to be getting so close, I'm desperate for everything outside.

But the past few days have been difficult, I’m hitting a wall. I feel dreary inside. I feel like I’m losing my edge, my strength is being chipped away. The hours draaag their feet. TV is raining me into the ground. Facebook bores me to tears. I'm craving salt so much it's nutty. Reading makes me antsy, I haven’t left the room in over 10 days because of construction on my floor that may infiltrate my compromised immune system. And even when I can leave, the mask I have to wear makes me feel like I’m suffocating. I thought I would take more walks while being here, but I just haven’t. For some reason it feels daunting, maybe more depressing than even the inside of this room. Fluorescent lights steal bits of your soul.

Maybe it’s the weather. Maybe it’s not seeing the sun much the past few days. Mostly it’s probably that I haven’t been outside in the world in almost a month now. I missed August, you guys. I’ve been inside a room for all of August 2013.

I cannot express my gratitude for everyone’s love. Through visits, cards (tons!), care packages, thoughtful gifts, time, food deliveries, bags of coffee, bracelets, facebook messages, humpday videos(!!), phone calls, good vibes, etc. etc. Without you I would have cracked up weeks ago. I’m hanging on here, even though just barely.

Somehow, I will endure this. I will endure this because the rest of my life is waiting. But I’m scared. I’m scared that the next leg is going to be more difficult. I have a short time out of here and then I check right back in for another month, at least. And it’s harder stuff, rougher chemo, stricter foods, more of the little white box... I’m not sure I can do this again. I’m barely doing it the first time. I don’t get much time off to recoup, to gain grounding again before the plunge back in. I feel like this train is speeding up and I’m still holding on to the back trying to run along with the quickening pace. It’s going to get really hard to do that soon.

So this morning, to stem off the sadness, I did the only thing that seemed right. I spent a good 40 minutes utilizing my dance floor to the Capital Cities album. When in doubt, dance. As Pina Bausch says: dance, dance, otherwise we are lost. Here's something to get your heart pumping, from a beautiful film documenting her work, Pina:

I felt so much better. I broke a sweat. I swung my arms and legs into the air in crazy rhythm. My knees held together (they do feel a little wobbly, I’m not quite as free as I used to be). My saggy butt is thanking me. I’m tired of taking turns sitting between my bed and the small variety of chairs in this room. I need something to enliven me and bring me energy and joy. I need dancing. Dancing will continue to be my savior, time and again. Almost nothing is better, in this life.

...And you want to know a secret? In the height of my wild ruckus: hands splayed and knees reaching new heights, upper lip dabbed with perspiration, shoulders wiggling—I quickly glanced across the way into the window in the adjacent oncology tower…and spied a camera and a little red light.

dance, dance, otherwise we are lost: Capital Cities -- Kangaroo Court

diary of a bald foodie dino

I’ve gotten to that point of my insane asylum where I’m now blogging about my food. I didn’t think it’d come to that, but here we are. It’s a dreary day out there, my room is unusually dark and the internet is spotty. What’s a gal to do?

It took me several days to realize that it wasn’t just that everything I was eating was incredibly bland and in desperate need of salt (these frozen dinners are to DIE FOR otherwise). About a week ago I finally deduced that the chemo must have caused chaos and confusion in my taste buds. This is a common occurrence with patients: chemo makes a mess of your sense of taste, often causing things to taste generally metallic (this side effect is finally starting to subside). It’s a good thing I discovered the salt thing before I started overloading in a feeble attempt to taste food. I can see it now: “Well, your cancer has responded very well but unfortunately, we now need to keep you here longer because your sodium count is off the charts…” #pillarofsalt #thebible #nolookingback #oops

And now, it's official. After days of contemplation and fear of the scientific theory, I tried the ultimate test. I put table salt directly on my tongue. Hypothesis proven, all salt sensors are completely gone. It was just as strange as I thought it would be—simply the gritty texture as it dissolved, and absolutely no flavor, whatsoever. From here, the only option apparent to me is strictly jelly beans and skittles for the foreseeable future… Somebody’s gotta gain the weight around here.

…and for your continued entertainment, please keep in mind that most of the time I’m either edging toward straight bald, or look like this. As if I couldn't get more weird and rat-like, let's add a dino head: #thecapital

lady in waiting, dino edition.

...so many chin straps.

what’s next? stickers? glitter? finger paint? sequin bedazzling? 

Let's take a vote. Just look at this canvas:

I’m also accepting your creative suggestions. I still have a fair amount of fuzz, so licking playing cards and sticking them all over my head is not a reality quite yet. 

But a gal can dream.

trials, exaltations, and pin-up ariel

The final portion of the bone marrow biopsy came back this morning, and it’s good news. I’m not in complete remission, but that was expected somewhat. However, I have less than 5% blasts in the marrow, which is where they needed me to be to prep for transplant. This is great news! It looks like I won’t be needing another round of the induction chemo after all. For this I am so grateful. The team told me this morning that it may just be a few more days while my counts return. No date yet, but I’m celebrating as best I can! It may look like I just painted my nails, but it's me rejoicing and stemming off fear. Gotta use what I got. Pink nail polish, a cup of Atomic coffee, and scouting the street out my window for signs of life (no one walks down this street!?). And of course, my reliable 40 minute getaway via Battlestar Galactica.

In other news, I’m almost completely bald. To be honest, this is harder than I thought it would be. I miss my hair. It is chilly. I miss it when I look in the mirror. It’s really surprising how different and unsettling a person looks without any of that stuff. Even the ¼ inch buzz provided more comfort physically and emotionally than it’s shorter cousin, 0 inches. I try to play it off with comedy (and this does work most of the time): putting funny ribbons and things on my head that make me look like a newborn (frightening.). But often I feel really ugly. It’s hard when you already have some bad things going, to then add another layer of self-consciousness on top of it all. Add to that hours of sitting around with minimal movement, because exercise is more tiring than I could have ever imagined. Even though I was fortunate to get a stationary bike in my room, even 20 minutes wear me out and I’m falling asleep by 8pm every night. During my waking hours alone I’m basically spending time watching my muscles dwindle. Greetings, flabby flabberson.

I know this is just part of this course, that “everything I’m feeling is normal” which everyone keeps reminding me. This is only minimally comforting. And though I try to cling somewhat to the history of people who have gone before me and endured this and emerged on the other side healthy and beautiful—in spite of all, still I find myself on this side of the wall to be scaled. And it’s a towering wall, cemented and sterile. I’m trying to squash my face up to the peep holes to see through to the other side, but they are few and far between and obscured. I often have a hard time imagining my life after this; there are so many unknowns. Sometimes it seems like too many.

My body has been through a lot.  It is now working hard to recover from all the poison that killed my blood. I mean, what the hell, it’s not supposed to take hits like this, my poor cells are probably freaking out. I need to love them and appreciate the work they’re doing. I need to take it easy and let this body do what’s it’s programmed to do. But it’s hard to do that. I want to take control; I want to see my body strong in the way that I’m used to. But that is not what is available to me right now. My body is not exhibiting strength in the way that I’m used to. I feel weak, ugly, pale, naked and flabby. But even as I write this, I know that this body is exhibiting strength in other ways. It took a real blow from the chemo, and is responding really well, against odds thrown in its path. It’s averted a lot of side effects for me, extraordinarily, keeping me feeling relatively normal this past week. In spite of being pummeled and pillaged and squashed, my feeble bone marrow is still trying it’s best to heal me. And I’m sorry that it has to be sacrificed on the altar at the end of this, in order to get my body healthy and functioning, to keep it from killing itself. My immune system didn’t mean to go haywire and revolt. Here I find a hilariously accurate reference to BSG, oh no I’m turning into that person—this is coming together in my mind as I write this—My immune system is Sharon Valerii, a cylon who didn’t know she was a machine, who operates very fully as human; but her fracked up programming comes alive without her consent, and she does bad things. I really feel for Sharon, she’s one of my favorite characters. Perhaps now I know why.

And now, my crossover to NERD in utterly complete. Alas.

So here’s to me finding ways to love and appreciate my body and what it’s doing for me. It’s surviving, in spite of all. The best thing I can do for it is to think positively, to have compassion on it. It’s the only thing I think I can do. So I will try. To look beyond the seeming failures of outward strength that I’m used to, and to exult the signs of strength that it’s actually showing. 

In the meantime,

in everywhere we look

mewithoutYou has been my number one absolute favorite band of my heart for over eight years. Even referring to them as “my favorite band” feels inadequate—it harkens back to some silly girl’s sappy totes fav band (which they were in high school.), but it’s become something much more than that. Over the years, these gentlemen have influenced my life in a real way. They have seriously shaped my life, my thought process, my art and life philosophy in a way that words cannot begin to capture. I have grown with them through every stage of their music, and every album has contoured the years in which it dwelled. They are at the top of my list of “Can Do No Wrong”. Musically they are eclectic and disobedient; lyrically they are excruciatingly profound and yet the simplicity and folkloric influences manage to stray away from pretentious preaching. It’s a lifelong exploration of mysticism and mortality and childlike wonder. Their collective work is like a strange mirror I’ve been staring into for years.

Tonight they have a show at the Great Scott in Boston, to which I bought tickets for months ago. Obviously I am unable to go tonight, which really bums me out. It’s the first show of theirs that I’ve missed in 8 years.

And today, unbelievably, they were in my hospital room, laughing and singing and tapping on my juice glass and mugs for percussion. It was a moment unparalleled. I shook all of their hands, apparently, as they came in, but I don’t remember the first few minutes because I was so in shock. I can’t believe that even happened. It happened. Holy. I was having a bit of a difficult day, honestly: feeling weepy and even a little bit angry this morning. I had another bone marrow biopsy today (tramp stamp #3), and I think I was more nervous about it than I had realized—it decides whether I am here for maybe one more week, or three with more chemo. I also shaved the rest of my tiny hairs off this morning, they were still coming out and making me all itchy. I was feeling dejected and lonely, I knew I was missing the show tonight, I wanted out of this whole thing, it was all too much. I knew days like that would spring upon me without warning—that seems to be the way in which bad days operate. I wanted my secret escape hot air balloon. I was in desperate need of some cheer. Did I ever receive more than I could hold!

We sang, we clapped, we laughed about chain emails from grandmas, we had a moment shared over Martin Buber. (Here’s a nugget revealed today! Ten Stories’ first song, February 8, 1878, is Martin Buber’s birthday! WHAT?!). They asked if there was anything I especially wanted to hear, and of course I couldn’t think of anything, I wanted it all, they could have played anything. So they played three of their songs: Timothy Hay, In a Sweater Poorly Knit, and A Stick a Carrot and String. It was immaculate. The face of transcendence. 

My dear friends and family somehow put this surprise together for me, multiple people contacting them and working it out and I had absolutely no idea about any of it (apparently I am quite gullible and oblivious! who knew?! this is good because I love surprises). I still can’t believe that it happened, I have butterflies in my stomach when I think about it. And it’s not because I am a very star-struck sort of person, because I’m not. I am just so floored by the kindness, that they came out of their way to come visit me. I am utterly humbled by their presence. They are great artists to me, artists that have made me a better person. I am so happy to have met them and shared some precious time. Who could ask for more? I am full up. How can I ever be empty again? When I am sad, which I will be in the future, somehow, seemingly inextricably—someone take my face in their hands and tenderly remind me of the hour today when I was full up.

thank you Aaron, Michael, Rick, Greg, Brandon, Mike and Mike(Ike). You really made a moment today solidified in this girl's mind. It was important and lovely and meaningful and human. I will carry your kindness.

I will also be looking for your a cappella Billy Joel cover album, thanks for the taste of that goodness.

in everywhere we look, in everyone we meet, in every blade of grass, it doesn’t matter what you’ve done, there’s a love that never changes, Allah, Allah, Allah---

the wells of fancy hair

The steps to my new hairful(less) self, to be revealed to you!

Here's from the first half-shave, a fun photo snapped by my friend Dan:

One new nurse keeps calling me “so cute” and has asked me at least twice how old I am, after which she might as well have slightly raised her eyebrows and cocked her head uttering a sweetly sarcastic “really.” She’s told me three times that I must be 17. It’s fine, but why put me down even the little bit, I have cancer for godssake. She asked me what I do, and I felt a great importance to explain to her what I actually do, a big girl job, I teach and direct children’s theatre, have for over four years—and then added on quickly that I work at a café too. I’m not ashamed in the least bit that I work at a café—and probably will for a whole lot of my life. I love it, and it allows me the time and freedom and lifestyle that I want. But for a split second I was aware that working at a café is exactly what a 17 year old does. Alas. I told her, twice, that it must be the half-shaved head thing.

This is from two days ago, I put on a little lipstick to celebrate my sister's birthday.

"sup world, I'm almost 18!!!!!!!!!!111"

here's one of my family celebrating with my favorite restaurant take-out and cupcakes:

totes goofin'

A FEW HOURS LATER…

The deed is done.

I am officially either joining the army or I have cancer. Who knows which one is worse in my book. But take your pick. As much as it is exhilarating to shave it all off, I still cried. It’s more than having no hair, or shaving it off in rebellion or whatever—which is how I’ve always pictured that I’d do it. I’ve always wanted to shave it all off; I’ve come close with all my weird haircuts over the years, but I’ve never actually gone army. Or, cancer, I guess. It means more than no hair. It’s the undeniable outward showing of what’s going on. Something that up until now has been relatively invisible (except for the weird-smelling BO, that's real, thanks chemo). Here we go. I’m joining the ranks. I have cancer. I have cancer. It still shocks me sometimes. Especially the last few days, which thank god, have been pretty boring medically—I’ve almost forgotten. I feel totally fine. I sit and talk with friends for hours and hours and for a moment, time is suspended and I forget.

But I’m more than this. I’m not cancer. I’m a girl. a human. a writer. a child. an artist. a singer. a barista. a friend. a sister. a daughter.  a baker. a dancer. a hugger. a risk-taker. a fighter. a laugher. a crier. a magic bean buyer.

If you are a dreamer come in.

If you are a dreamer a wisher a liar

A hoper a pray-er a magic-bean-buyer

If you’re a pretender come sit by my fire

For we have some flax golden tales to spin.

Come in!

Come in!

-Shel Silverstein

joyous and unexpected: life

This morning at 3:00am I took my first shower in over a week. It was glorious, and all that jazz hooray stuff. Boy oh boy did I need that.

Celebrating the last of my hair, before it goes buzz either today or tomorrow. Stay posted, pictures will be taken of the process, we ain’t doin’ it the normal way. (hint: if dubstep had a hairdo, this is what I’m doing first)

No fevers in over two nights! That’s a lot of hours without fevers knock on wood. Either from good fortune or all the steroids they put me on…Why steroids? Well a couple days ago (one day? they roll together, I'm telling you) I had a fever of 105, the heights of which my nurse had never seen in a patient before. It was unresponsive to Tylenol, ice packs literally on my skin, and didn't really pass 103 (on the way down) until a straight up ice-bath, which I actually didn’t mind much because I was so hot. They also have this nifty cooling blanket (oxymoron) that goes under your body while you lie in bed, which I also loved. Apparently no one loves either of these things, but then again, not many people have a fever of 105 and feel like they’re on fire.

another thing to add to the list about checking into the Brig:

- get to see what my full eyes brows look like

first two pieces of mail in the hospital!

if sending me snail mail via is something you’d like to do, here’s the address that seems to work well! 2/2!

Rebekah Jordan

7b-40

Brigham and Women’s Hospital

75 Francis St.

Boston, MA 02115

In other news, this kind not as nice. I could only find one other CMML patient blog (it's pretty rare version of leukemia, so it was hard to come by), and I found out this morning via checking in that he has passed away. He was over 65 I believe, and suffered from major complications of GvHD post-transplant. I know this isn't my story, but I grieve for him. He was a funny writer, his name was Boone.  He wrote a lot about the food he was eating and the foods he loved, his daily doings. What a hero. I'm trying to stay positive and keep the fight. It's hard to receive news like this, though I know things like this will always happen in life. Life is not always a joyride, it is the unexpected. and sometimes the unexpected is joy, sometimes sorrow. It brings back the reality to the stark front. This is a disease, and there are no guarantees. It's dangerous. It's scary, it's the unexpected. I will live a good day today in memory of Boone. I hold tears in my eyes as I write this, but I know that this path is laid before me, and I must walk it all the same. So might as well be as brave and fearless as I possibly can, in spite of all setbacks.

I've been thinking a lot about Rilke's line that I keep repeating: 

Let everything happen to you: beauty and terror.

And I think that on some counts this sounds like a passive way to live one's life.

But I think that rather than passively letting life mow you into the ground, as it could suggest, or be blown around like a leaf in the wind, I think it still means you go to bat. You go to bat for some of these things, and you just swing at whatever is pitched your way.

pulchritude

Being human is a novelty not a mere repetition or extension of the past, an anticipation of things to come. Being human is a surprise, not a forgone conclusion. A person has a capacity to create events. Every person is a disclosure, an example of exclusiveness.

One thing that sets man apart from animals is a boundless, unpredictable capacity for the development of an inner universe. There is more potentiality in his soul than in any other being known to us. Look at the infant and try to imagine the multitude of events it is going to engender. One child names Johann Sebastian Back was charged with power enough to hold generations of men in his spell. But is there any potentiality to acclaim or any surprise to expect in a calf or a colt? Indeed, the enigma of human being is not in what he is but in what he is able to be.

                                                                                         -- Abraham Joshua Heschel

Last Sunday night in my living room, surrounded by beautiful friends, we poked our fingers (and thumbs?) into books like pies to see what kind of plums followed them out. This excerpt was discovered by a dear friend. It struck me, as I have been repeating to myself like a mantra: for one, Rilke's poem (let everything happen to you…), but also the nameless phrase "Humans are capable of amazing things" It's clear that this is true, when writing captures your heart, when cancer can be cured.

We had a handsome afternoon lounging in the grass, tossing frisbees, grazing an elegant picnic, bouncing around the arcade, hogging the photo booth. What a wonderful thing, what wonderful people.

I’ve been thinking. Not many people get the opportunity of specific time to dedicatedly shape their inner universe. What a unique experience. Some do this by choice, I suppose, via hermitage or nunneries-- but not this girl. No voluntary solitude for this extrovert. It's a hard thing. 

I’m sitting here, half-way through the week-long chemo regiment, and I can honestly say that it’s hard to shape an inner universe when you can’t keep your eyes open. I haven’t been able to read like I had planned, or write—in fact this blog post is to the edge of my ability. It’s hard to do things, impossible to stay still, yet it’s my only option. No place is comfortable, I am restless and yet exhausted. But I am trying to write something of it down, so I have some way to break up the monotony.

Last night/early this morning I won the award for most interesting patient. First, I had a fever. Nailed it! Then I passed out, twice. I’ve never been the fainting type, but since this has begun I’ve gone out cold three times. It’s a scary thing. I remember parts of people calling my name and carrying me under my arms, waking up for a few seconds half-standing, then on my bed being wheeled across the room. (I'm doing okay now, I just had very low blood pressure)

In other news, I am totally winning the output race. Actually to my detriment, they don’t want me peeing as much as I am—they’re saying my I/O in negative by about two liters (peeing out 2 liters more than I’m getting in). I say, it’s all for the cause. *lackluster fistpump*

I’m counting down the days until chemo is over. I hope when the poison is done being pumped in here, I’ll start to be more myself and less like the drowsy chaperone of my life.

Here’s to better days, brighter futures—both of which I look forward to with glazed eyes and lethargic anticipation…

this hotel has great healthcare

How do you pack for this weird ass vacation. I want to be comfortable. Don't need to worry about clothes, or makeup, or hair stuff. I need to entertain myself for at least a month in a small white room that I can't leave. What do I bring, what are the bare essentials, like this decorative globe.

...4 reusable grocery bags, 20 books, and a yoga mat later...Did I bring too much? Oh, I forgot stupid things that aren't provided like hangers? What kind of hotel IS this. where's the mint on the pillow, where's the mini bar.

And so we're back to the Brig (has anyone noticed this abbreviation before??), the hotel/dorm with tasteful medical wall decor, tiny exfoliating bath towels, TWO tv's (I'm in a room built for two. Let the dueling infomercials begin), the screaming water pipes from the room next door, where I get weighed every morning and can't touch the ground when I'm on the toilet.

In other news, took my last shower for a week. Indoor camping at the hospital- once we start the continuous chemo I won't be able to shower. Whomever gets delightful day 7 as their visit day, BEWARE, I've been having poison pumped into my unwashed body for seven days and seven nights. Seven upon seven upon seven. I think this warrants me the mark of Cain.

Day 1: Enjoying the Last of my Bedhead

Positive things about checking into hotel (motel?) Brigham n' Women's:
- nothing is expected of you than basic functions to survive: sleeping, breathing, eating, drinking water*
- servants
- reunion with my ever faithful dance partner Antonio (IV pole)
- movies all the time
- heated blankets whenever I want them
- lots of time to read
- lots of time to write
- don't have to clean anything anywhere
- no dishes
- one of those electric beds that sits you up
- own bathroom
- you meet so many people
- new experience
- great yelp reviews

I'm in a larger room than last time (remember, 2 TVs) so there's lots of room for dancing. COME AT ME

*They measure output by peeing into a hat, I am determined to be in the lead on the floor. Last time the nurse came in around day 3 and said in hushed excited tones, "I have to tell you something, you peed 7 liters in the last 24 hours." SEVEN LITERS

I'm currently not able to eat or drink anything as we wait for the Hickman line to be put in (takin' two to the chest. two lines, that is). So this will put me behind in the output race. The nurse said that if it gets to be around 4pm and still no Hickman, they'll have to give me IV fluids. Oh joyous day that I can look forward to intravenous water. #hangry
---
Just got the word, gettin platelets . Platelets, it's what's for dinner. #bottomsup
---
Update, no platelets. Apparently yesterday they were at 24, and this morning's labs showed they're at 94. She said she has no explanation. I said magic. Either way, #goinghungry

New song I'm working on, let me know what you think of the lyrics:

Welcome to the hotel BrighamWomen's--
sucha lovely place (sucha lovely place), sucha a lovely AHHH NEEDLES
Little white room at the hotel BrighamWomen's-
Any time of year (any time of year), you can find me here...


peace and hair grease,
B