Day 71: no more cyborg

After three or so failed attempts at writing this blog post over this week, I’m settling in: trauma behind me, coffee in front of me, cookie inside of me. It is a dreary day at the end of a week of dreary days, but I got up enough energy to make my first Chemex of coffee in months. We’re tired, that’s what. Marie and I had to get up quite early this morning to make early appointments in Boston. It’s never a favorite.

Today I got my second Hickman catheter line taken out. I was very afraid of this. Terrified. The last experience of getting the right side out was…beyond traumatic. It was excruciating. The manboy performing the procedure clearly didn’t know what he was doing: he had to leave to get more lidocaine (local anesthetic: numbing stuff they syringe into you at the area) TWICE and even after all the lidocaine I could SOMEHOW still FEEL him snipping and cutting and hacking into my chest wall. I couldn’t control my flailing and screaming, that's how bad. And I have to tell you, that I have a pretty high pain tolerance. Apparently once it switches over into medieval torture, my reserves aren’t so deep…

All kidding aside, it was the. most. painful experience of my entire life. I could not do that again. Thinking about it would make me cry and panic attacks were trotting not far behind.

However, today for removal #2, the doctor assured me that it will be absolutely nothing like what happened last time; that he does multiple of these procedures every day (my rookie for #1 had probably just graduated high school.). If for some reason the pain came again as he’s going, we’ll stop and move to a procedure room, and they’ll give me some heavier drugs to knock me out. This sounded reasonable. So, properly Ativan-ed, I agreed to let the doctor take it out the way they usually do it. The doctor was very reassuring, he set the site, cleaned the area, gave my some lidocaine, told me to take a deep breath and hum, and viola it’s out. I was shocked. The last one took over an hour of this child-man hacking away into my chest and me crying out in agony. This one was over before I knew he was actually doing anything. Unmitigated Success. No More Cyborg.

So we came home, and I made some celebratory coffee and put on some trashy TV for the background of this post (Say Yes to the Dress, all day errday)

Now, for some catch-up. As you may imagine, a lot has happened since my last post, millions of years ago. Honestly, most of October was spent in the hospital for one thing or another. One week after I got out post-transplant, I was back in for dehydration (the most common cause of re-hospitalization. Believe me when I say it’s harder to stay hydrated than you would ever imagine! I can’t explain it). I also suffered from extreme body pains, muscle spasms, and lots of itchy rashes and fevers that make time go by at a confusing rate. Then suddenly it’s Halloween, which I spent in the hospital as well, sleeping most of the day as usual. After it all, they said the closest they could get to diagnosis for all the rashes and body aches etc. was some sort of viral meningitis. Because it was viral, we had to just let it run its course, treating the symptoms along the way. Honestly, most of October is a blur to me.

November. It’s hard to sum it up, but it was a more emotionally drained month, overall. I didn’t see too many people, I didn’t feel like socializing—which is very unlike me, so I knew something was up. I mean, cancer sucks, there’s going to be down days, and I accept that. But the trend had been moving toward the negative, almost exclusively. There wasn’t much to do… I waded through the muck, hoping to arrive at another side. I watched a lot of Netflix. I slept. A lot. I didn’t have the energy to write anything because I felt I had nothing to say, except maybe to whine, but that didn’t sound appealing or cathartic either.

So, even though it is corny to do so, I’m going to make a list of things that I am thankful for.

I need to remind myself that everything does not suck.

- Blood counts have been great! (no transfusions since before my transplant!)

- Liver counts are approaching normal!

- I can now take a shower without having the fuss of covering my lines that never worked to stay dry in the first place!

- we’re cutting down on some medications

- Marie, for her constant care and love towards me.

-  the towel warmer in the bathroom

- LUSH bath products, especially their bath melts. holy. holy. holy. cow.

- heated blankets

- 30 more days until I can eat salad. (day 100!)

- the bittiest amounts of grandpa hairs are growing in! (also wily eyebrows)

- tis the season for Christmas cookies

So with hopes that perhaps it will not rain for the rest of our lives, here’s to the sun. Hope we see you soon, brother. 

Day 21: remember.

Today it has been proven once again that the world is a beautiful thing. And it seems these spurts of excellence always arrive when I need the reminder. Even though I am home now. HOME, for two days (they feel like weeks already! AH HELP)! And I know it's so so much better than a hospital room! I still find myself in low times and spirits. Today, when I woke up resentful and sad and done with all this. I was overwhelmed with this mean thing, cancer: even after all these months that've passed. Even though its somehow, unbelievably, integrated itself to be an otherwise commonplace part my life. If you can believe that. It's just what I do now: I spend a lot of time in hospitals and alone, and I flush my Hickman lines and have no hair. Now my eyelashes are mostly gone too. I've been holding it together; been able to find the attitude I want to have. Living out joy in the middle of this just shit travail. But I feel my strength fading. This morning I felt I couldn't do it anymore. All my joints ached. There's a constant metallic taste in my mouth. I feel trapped, secluded. I spend more time than I probably should staring at myself in a mirror. My skin looks a strange color, chest bruised and scarred from lines put in and taken out, eyes red and puffy, lips pale and indistinct. I look...sick. I look sick. Even when I don't feel too bad, my body is there to remind me. Every so often it makes it hard to breathe for a while--as I beat through the thing to try to see straight again: that this earth is delightful, prepossessing, a surprise, magnificent. And that this world is tread by truly compassionate human beings.

Today my sister happened to start up a conversation with an employee at Trader Joe's (not unheard of, they're the nicest employees ever) while she was searching high and low for my odd grocery requests (I have high maintenance grocery needs, apparently), and after fifteen or so minutes of just casual talk, helping my sister to find the things they actually carried--the subject of our story came up. That I have cancer, and Marie's taken a year off of school and moved up here to live with me and be my caretaker. When put like that, it's not one you hear every day, I suppose. This lovely girl helped Marie find everything she needed, and then insisted upon paying for all of the groceries. This woman, never having met Marie before (or me at all), is so caring and kind and generous that she bought almost $50 of groceries for us today. What kindness, what goodness! Look at what the world has to offer! I am blown away. So this is a thank you to you, Sarah.

I would also like to thank Trader Joe's on the big stage because this is not the first time they have given such kindness. A cashier at a different branch gave my mother candy to bring to me in the hospital. WHAT? Traders is doing something right. The world is doing something right.

So I can't forget. I will force myself to remember. Even days when I feel trapped and shitty and fat and green and puffy and sore. People are so full of love and beauty it's stupid. And karma is real. You give love and you get love in return, I really believe it. I'm holding as much of the world as I can muster in the Light right now, and I feel so much more at peace. Love. is healing.

Day 12: waterpark sausages and superpowers

Without fail, I have now woken up between the 15^th and 19^th minute of every evening and morning hour for the past three days. I was at a loss as to how this could possibly be so regulated, but then I remembered that I have magic coursing through (or maybe, camping in) my veins. 

I am currently experiencing the joys of both esophagitis and mucositus, which leaves my throat in shreds and my mouth watering constantly—which, if I permit myself to swallow (or more likely, Autopilot compels or Gag Reflex demands) feels like a sloppy ninja with a sharp knife. This often ends with acute nausea, not to mention the intense pain, so I’ve stopped swallowing altogether. They’ve given me one of those spit things from the dentist, Mr. Sucky (aka Mr. Thirsty) that, as gross as it sounds and most certainly is, is helping tremendously. So, if you hear something akin to the guttural groaning of Frankenstein’s monster, followed by disgusting sucking noises: it’s probably just me, flailing in my own saliva. oh joys abound. And if you like this flowery description, you’re gonna love what’s coming next!

I am Bloated Sausage Girl today. The newest superuseless superpower: the ability to bloat parts of your body at will. Because I can’t drink anything (or eat anything, but drinking is the most desired thing right now, SO THIRSTY) they have me on lots of extra IV fluids to keep me hydrated (STILL SO THIRSTY). However, my body doesn’t know what to do with all the extra fluid. So instead of being a pal and quenching my thirst, it’s decided to be a jerk and make my fingers and toes and legs the unwilling recipients. Yes, I did always think my hands looked like water balloons FILL ‘EM UP.

My nurse keeps telling me that I am doing better than most other patients, some of whom are bedridden for many days and are not as active as I have remained. You don’t realize how big of a deal showering actually is until it’s the highlight of your day… She also keeps reminding me that all will return to normal, eventually. Until then I will continue to be so thirsty, and dryyyy, and bloaty, and also hungry because I haven’t eaten in two days. But for some reason it’s the thirst that’s getting to me. Mr. Thirsty and I have a lot to talk about. Food? Forget it, gimme the water.

Day 1: so never mind our plan making, we’ll start living!

Transplant: done did. 

Well, it wasn’t exactly triumph as I pictured it. That is, triumph: verb. 1) to wear a party hat like a newborn 2) listen to hardcore as stem cells surge toward your body 3) to be a badass. Instead of that, in true cancer pants fashion: out of the blue marched an immensely fun series of anxiety attacks. It began pretty promptly after they told me around 3pm that the transplant wouldn’t be until 9pm—I had been planning on around 5 or 6. So this was a long time to wait. I thought I had been doing fine, I felt ok. Earlier I had watched You’ve Got Mail (ie. the most perfect film, why can’t I LIVE IN THIS FILM--the stark difference of situation in which I find myself perhaps got to me.) To be told that I had to wait even longer for this pretty scary thing to happen to me, while also anticipating how anticlimactic the actual event would be—started brewing something, apparently. So to slow my pacing and calm my labored breathing and crying spurts, they gave me a full dose of Ativan. Then I slept for a few hours, and remained drowsy with more Benadryl through the entirety of the thing. Talk about things being other than what you expect… however, I did manage to listen to Torches Together by mewithoutYou.

Thank you to all who wished me well and a happy new birthday etc. etc. etc! I’m sorry if I didn’t respond to your phone call or text message or whatnot, I spent a lot of yesterday in a drug-induced haze… I love you still. Thank you for understanding.

I'm feeling a lot better today, besides a few episodes of intense nausea. But all in all, I don't feel that different, which, I don't know what I was expecting. Now we start counting, waiting.

Here's a reenactment photo to quench your at-least-I-look-better-than-that thirst:

you can see my family put up party decorations, winner.

Why burn poor and lonely

under a bowl or under a lampshade,

or on the shelf beside the bed where at night

you lay turning like a door on its hinges?

First on your left side, then on your right side,

then on your left side again?

Why burn poor and lonely?

Tell all the stones we’re gonna make a building.

We’ll be cut into shape and set into place—

or if you’d rather be a window, I’ll gladly be the frame:

reflecting any kind words, we’ll let in all their blame…

and ruin our reputation all the same.

So never mind our plan making, we’ll start living:

anyway, aren’t you unbearably sad?

Then why burn so poor and lonely?

We’ll be like torches! We’ll be like torches!

We’ll be like torches! We’ll be torches together—

Torches together!

We’ll be like torches! We’ll be like torches!

With whatever respect our tattered dignity demands,

torches together, hand in hand. 

Day -1: hXc

Today is the day of rest between getting chemo (all done! forever?! I hope so) and when I get the magic/stem cell transplant. I don't have an exact time yet for my new birthday (party!) tomorrow, we're still waiting to hear what time the cells fly in from Europe. Isn't that insane? Did you know that after this, my blood type will change (unless mystery man also happens to be A positive--who knows, it's possible) and ALSO, I will have y-chromosomes in my blood! I will now be able to get away with all sorts of high-profile crimes, because my blood traces will point to a man. GOODY. At least that's one thing I don't have to worry about now.

I'm sitting here in my room, drinking my coffee which is very affected taste-wise (gracias, chemo), but the ritual is not lost on me. I feel more energized than I have the past few days put together. I had a hard time sleeping last night so they gave me some druggies to calm me down, but I'm bouncing back with a force here, I can't sit still for too long...

Tomorrow, tomorrow, and tomorrow: Day 0.
A big day? Yep. and how we gonna celebrate, you ask?

Here's the Now on to Being a Badass playlist:

underoath "In Regards to Myself"
Defeater "Blood in My Veins"
Norma Jean "Memphis Will Be Laid to Waste"
Blind Guardian "Precious Jerusalem"
Life in Your Way "Reach the End"
mewithoutYou "Torches Together"

This will be playing for the 15-20 minutes it will take for the cells to enter my body, fists in the air.

I'm bringing it ALL back. BLOODxBROTHERS

headbang with me. TORCHES TOGETHER

and for those who are interested, my new address here at the hospital! 

Mail is so fun, and it gets me through.

Bekah Jordan

7B-33

Brigham and Women's Hospital 

75 Francis Street

Boston, MA 02115

aaand, we're live

Checked back into the Brig today. After enjoying my last cappuccino for a long while at Atomic, I packed up my two little bags and headed in. To pump up the drive (which was lacking pump, let me tell you. It was really hard to come back here.), we put in an ancient mix CD that I recently found, only to discover the joys of the boys of Backstreet and Nsync. The crooning/squealing chorale of gentlemen and their identical 90’s beats made so many of the fears go Baby Bye Bye Bye.

I got another Hickman line placed on the other side of my chest so I officially feel like a marionette, and I am now sitting in my new digs here on 7B. This is my favorite room so far I think: it’s pretty large, and though I haven’t experienced the morning sun yet, the afternoon rays and sunset were pretty lovely. I have a much better view of the smokestacks from my window this time. Also, there’s a bit of color on one wall in here, a sage-y green, which isn’t too bad. AND, the clincher: the toilet is magically lower, and I can semi-touch the ground when I pee.

I wasn’t able to bring as many things with me this time; especially by way of decoration; as the items allowed in the room are stricter this time around. Everything needs to be wiped down (made very clean), and fewer things are better. I’m still waiting to hear if I’ll even be able to make my own coffee, which is a real mental and physical ritual for me at this point… so I’m hoping for the best here. But it’s pretty strict. Example: I brought all my clothes freshly washed and in clean plastic bags, only to have them rejected because they need to be in ZIPLOCK bags. So I am relegated to this delightful excuse of a Johnny—which, by the way, WHO DESIGNED THESE?!? Your ass/back will WITHOUT FAIL be hanging out no matter what you do. Why isn’t it just a bathrobe? A ROBE with ties the match up? How can this be too much to ask?

But here we go, starting chemo tomorrow (and by tomorrow, we mean, 12am tomorrow, a few hours away tomorrow, no time like the present tomorrow.). I’ll be on a tight regiment, I can’t remember the details of the thing fully right now, but it’s pretty constant chemo for four days straight. Then I’ll get a day off to rest/barf/dance (as the spirit leads). Then my Re-Birthday is next Thursday, September 26, 2013. It’ll be a short transfusion/transplant: 15 magical minutes of stem cells swimming into my body, accompanied by a 15-magical-minute metal/hardcore playlist (thanks for that great idea today, guys!). I always wished I was born in the fall, and now I get my wish. Two birthdays, kids: twice the parties, twice the cake. All you lame single birthday people out there won’t know what you’re missing. Just a $100,000+ drug-induced haircut and the whatnot percentage chance of death…

But we’re staying positive. We’re staying positive from here on out.

I have to say, this is getting harder for me. Recently, more days than not have been heavy. Something is amiss. I’m trying to stay optimistic, but it’s wearing on me, fear is really creeping in. It’s hard to see life after this. Sometimes I can’t see anything. And the here and now isn’t too comforting either, I feel different. It’s elusive for me to explain. I’m afraid my brain is changing, like my personality shifted when I wasn’t looking, or, I have been looking but it’s happening before my eyes, uncontrollably. The way in which I experience myself right now is so different than how I ever have experienced myself before. I feel too serious to be me. Monotonous, dull, confused, self-centered, tunnel-visioned, uncertain. I have a hard time making decisions, even simple ones. My imagination and spontaneity is stunted, my wonder at the world is small and dry. The desire for that wonder and awe and love is still there, but even that feels sad and dehydrated. I’m like a boring version of myself. I don’t like being with me right now, so I can’t imagine what other people experience. I want to apologize. But even that doesn't feel right.

I’m having a hard time explaining it, how I feel, to people when they ask. I guess I don’t even know how I feel. I think about death a lot. Like, a lot. I want to enjoy and love my life and experience everything and live every day, and not care about what’s coming. But I find myself unmotivated, slow, like I don’t want to get involved if I’m just going to die. It’s a protection thing maybe. I’m trying to protect myself as well as other people from my own death. But it’s so casual the way I think and talk about death these days. And that too is depressing, the informal nature of it all. But that’s the way it is. Death happens. And it happens. And everyone else gets to or has to move on, and you miss out on what would have been the rest of your life.

And I’m afraid of dying. But even more so: I’m sad about dying. I don’t want to die, because I want to love and experience things and people. I’m not done, damnit. And it seems unfair that death is staring me in the face right now, an old man with soft grey skin and a forlorn expression, wagging a long finger. It’s close, it feels so close. And I hate that. I hate it, it’s changing me, and I don’t think it’s for the better. I don’t like it. I don’t like myself right now.

My sister and I talked about the inevitable evolution of this feeling. Of course the mental stress of the past few months is completely unprecedented. I try to imagine that I’m not me; but rather I am listening to someone else tell me the situation. I say to this person, of course, this is inevitable, this is normal, this is an expected reaction to all that’s happening around you, with this lifestyle change forced upon you, with death hovering so close by. Of course it makes sense that simple decisions feel out of reach. Imagining your own death every day is not far-fetched. You are a real person, with emotions and impressionable moods and physical limitations. All of those things are being strained right now, and you are not in a healthy state to be fully yourself.

Maybe that makes it somewhat more tolerable. But all it really does is acknowledge the inevitability of the drab feeling, and it doesn’t do much in the alleviating department. It doesn’t make it easier to be with me, as I struggle to keep my energy going, or try not to slip into my head, mulling over and about my impending mortality or the possibility that I may die very soon. It’s hard to be fully present in the now. Even though I desperately want to be fully present and experiencing the world in the fullest way that I can, because that is how I want to be living. For some reason it seems barred to me right now.

It’s not this way all the time. There are glimpses. I am not always feeling this way. I see beauty. I have indeed laughed until I’ve cried and maybe even peed a little just in this past week. Some moments with certain people have freed me. But the amount of time spent feeling this way has drastically increased over the past few weeks. And I’ve watched myself become self-conscious and moody, quiet, darker, heavier, sadder.

Perhaps I’m prolonging this by writing it all down; perhaps I am making it worse. But I can’t deny it, I feel different. And like I said at the beginning of this blog, and how I’m trying to go through this, my life: to begin where I am. To allow myself to be exactly where I am, no moods or thoughts excluded. To let everything happen to you: beauty and terror. This thing was never going to be a joyride. I knew that. I wish I could bebop and dance my way through this the whole way, but sadness has its place too. As does terror. It’s a real experience, part of the Truth, and I guess some times are spent living there. I just hope that in acknowledging them, they too come into the light and can be made free.

doable things

So, I thought I would be able to get out of here today. Yesterday my ANC count was 337(!) and they were fairly confident that today I'd be over 500. But alas, my counts dipped overnight and we're back to under 250. Hopefully I will be able to go home tomorrow, but it's at least one more day in the box. I've packed up the room almost entirely, so it's a bit more like a cell now. But I'm keeping my head, because the end of (first round) captivity is near. And now at least I can uphold my one-David-Sedaris-book-per-hospital-visit rule.

To get psyched for my short vacation from the hospital, I've been working on a list of doable things.

go to Walden Pond
walk every day
get a massage
go to a show, preferably at least Mary Zimmerman's the Jungle Book
visit Portland and Tandem Coffee Roasters
dance my heart out at Murphy's
sip bourbon in the backyard
run around
eat a good deli pickle
barely look at my computer
go to deCordova museum
wear a dress
sleep outside
go to the farmer's market
clean and install my headboard
walk in the woods
coffee dates
sit at a fire
brunch with mimosas
see everyone
see the stars
hold hands
eat salad
find a carnival, ride a ride
eat a Marty's donut
go to a yard sale
picnic on the beach
a strong dark beer
touch the ocean
Todd Farm flea market
pancakes

not necessarily in that order, but that'd be fine too.

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…