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