Today I Threw Away a Shirt, and other stories

[Content Warning: suicide, depression, & the cursey words. Take good care, friends.]

Today I threw away a shirt.

Two days into my 29th year riding this globe, I threw away a shirt.

I’ll tell you why this is significant. It wasn’t just a shirt.

It was the shirt that I was wearing on a day back in February 2017 when I intentionally overdosed on prescription medications.

Most people do not know about this. Most were told I was hospitalized for a GvHD flare-up. Generic, fit the bill. It was really the first time I was not transparent about what was going on. 

I have not been able to write about it. I knew that in time, the impulse would come. This is part of my story. I am still living it, but I am afraid if I wait until I’m ready or wait until it’s over I may not be around to tell it. That’s the truth of it.

This past year has been record-breaking. I’ve never struggled so much in my life. I had already been through what I thought was hell. Turns out I was wrong.

There are much worse things than a life-threatening illness. There are much worse things than chemotherapy and Hickman lines drilled into your chest and javelin ass needles burrowing into the back of your hip. There are much worse things than wiping out a rogue immune system with a life-threatening treatment. And there are even worse things than eleven months strict quarantine from the whole world. 

I honestly didn’t think that a possibility.

But there are worse things. It’s called aftermath.

After all these things--and more but I honestly cannot list it all, and you don’t want to read that shit anyway. (includes literal shit, too. Like when you contract a weird meningitis-ish thing that Infectious Disease never figures out one month post-transplant, almost die in a negative pressure room, shit the bed and get hosed off in the corner hospital bathroom like a diseased factory animal waiting to be slaughtered. But I don't want to overwhelm you with TMI or anything... After all these things, one more thing after another after another after another: I kept thinking I had hit the bottom. Rock bottom, here you are. Okay. ...Oh wait--the floor broke through--falling falling falling--SLAM This. Is. Terror. No? The ground gives way again THIS is Terror right here. And...holy shit THIS IS TERROR!? The repeatUntil I can no longer make a stupid exclamation, just wordlessly paralyzed laying on the floor with every useless fiber wanting to just melt into the earth like I never happened.

And so it goes. Another depth I didn’t think possible. Over and over again. This is depression, I am (still) learning. I have dealt with depression for most of my life, but nothing before now has been anything like the past year. And I can’t put a date on it because everything's a blur. Dates, faces, names, to-do lists, memories, vocabulary, words at all… it’s a blur. Every day slips into the next one, vaguely linked together with bouts of sleepless, painful nightmarish hours of darkness between times when the sun is lighting up the part of the globe I happen to be sitting/laying on. For many people with depression, sleep is the escape. Bed is the safe place. For me, it is a battlefield. This disease caused by the stem cell transplant causes me to not sleep, and (so much) more. I wake up 3-15 times a night with excruciating muscle spasms. I’ve only just come to realize that they haven’t gotten easier. I’ve just...gotten stronger, or something. Or I’ve gotten used to the pain to the point that the intensity of the pain and how long it will last are commonplace enough just so that I don’t have full mental breakdowns in the middle of the night as often anymore. Often I lie awake surging with anxiety about trying to go to sleep that before I know ot's 4:30, 5, 6am, the birds are starting to sing and the sun is rising. It does not bring me joy, and that makes me even sadder, to know I am numb.

My personality has once again -and worse this time- taken a nose dive off a cliff into unknown sea depths and my pockets are full of stones. I feel broken, intrinsically. It’s hard to put to words, but if I don’t try now, I don’t know that I ever will. I’m terrified to post this, and I almost never feel that way about anything I write. Not like this.

Because I’ve been hailed a “warrior” Strong, brave. I’ve even crowned my body as the Greek Goddess in times passed. But she’s dead. Or hiding very, very well. Maybe that’s my glimmer of hope peeking out. Didn’t know I even had that, so there’s something.

And...She’s not dead, not all the time. There are moments when she is okay. I suppose if my bed was a refuge it could possibly be worse -which is hard to imagine- just because I’d be there all the time. But it’s not an escape. Sleeping is not an escape for me. It never has been I don’t have an escape. I feel isolated, alone, sad and broken everywhere I go. I feel I don’t belong anywhere. My myriad problems are so far reaching that no one knows wtf do do with me. I don’t fulfill anyone’s checklists, only parts of them; so I get passed off and passed over. This is true. I wish it wasn’t and it’s hard to write this. I am letting people I love down. And even worse, I am letting myself down.

I wanted so much to be the woman who fucking burst through cancer like Wonder Woman, came out the other side with gnarly scars but tales of wisdom and a flash of wit. But I’m just not.

I want to stop writing now, but I am going to keep going to see what I discover.

I wanted to be the superhero of my own story, but the actual truth is that my mother, Joy, is the superhero of my story. She is my best friend, the only person in this world who has seen everything, including hosing off my shitty butt for literally 29 years now. Thankfully that skill hasn’t been needed since I was 24, but still. She’d do it in a heartbeat if it meant helping me in some way. She is the most selfless person I have ever met, and will ever meet. Most days when I still want to disappear and cease to exist, she is the reason I can somehow crawl through.

So, if you’re still reading, you probably have some questions. Maybe not questions you would ever ask in person, because mental illness and suicide is so taboo that no one knows how to talk about it. I don’t either. I’m just trying to tell a bit of my story.

I was hospitalized with a very bad bout of pneumonia at the very end of last year that knocked me on my ass. It made every other pneumonia I’d had (which are numerous) feel like seasonal allergies. They told me it would be months of recovery. Every hospitalization comes at great mental cost. Less autonomy, less ability to function, less alive. January 1, 2017, I decided I was going to either shave my head or kill myself that day. It seems extremely unreasonable, even now, but it’s true. I shaved my head.

And I finally looked on the outside how I felt: like a terrifying ghost sent to haunt some girl’s life. I have a picture from that day. In it, I look like I am dying.

I remember thinking about it days afterward, regretting shaving my head and how, had I chosen the other option, there would be no space for regret. I found some solace in that. It didn’t last long, I guess. I started a partial program, but I hated it intensely so I stopped going.

Fast forward.

End of February finds me dully staring at a handful of pills saying aloud It’s so easy. It’s so easy. Apathy. I don’t remember too much after that.

I remember my mom bursting through the door I had sealed off. I remember vaguely the EMT dumping and counting pills on this desk that I am currently writing on. I have flashes of being brought down the stairs, them not being able to get an IV in the ambulance, the fluorescent lights of the ER, police officers everywhere, asking how many pills, passing in and out of consciousness- was I dreaming or awake? Is this what dying feels like? This is what dying feels like. This is what dying feels like. My mother holding my face, Not today, sweetie.

I am in ICU for several days, four I think. I won’t go into details here but it is horrifying and confusing. No other words grasp it, really.

When I am finally more stable, I move to a hospital floor under 24/7 supervision/1-to-1/babysitting. Some of these folks are much MUCH better at this job than others. I could talk about mental health treatment for days, but I won’t.

Then I go to my first psych ward. Transferred at 1am. This one doubles as a geriatric ward (??) and so my exposure to diarrhea is immediate. The next morning I discover that I have, in fact, slept in a bed with feces on it. I am told Oh honey I’ll clean that up for you. As if it was mine. I can't fathom what is happening to me.

I get out relatively early because I have an apparently common burst of vivaciousness after an unsuccessful attempt. I am glad to be alive.

Fast forward.

I go to a scheduled check-in with my psychiatrist and it ends with a very distressing admittance via ER to another psych ward. Cue Terror of a busy ER. People screaming, crying, bleeding; the sickening laughter of nurses amid the chaos and the squelch of wet shoes on dirty hospital floors. Apparently it is raining. When I’m finally transferred, again at 1 or 2am, I’m put in a padded room and only later find out that it doubles as their intake room and is not, actually, be where I will be staying. The first words I hear at 2am from a night-shift worker who looks like he’s in a shitty nu-metal band is, “What’s with all the transgender bullshit? You're one or the other, can't fucking pick.” This is a direct quote. He is talking to a coworker who agrees. For all they know, the emaciated depressed girl lying in the padded room three feet away is trans. Thankfully I am not a trans person in a psych ward to hear this but it cuts through me like ice. The world is cruel. I want to cry but I am too shocked at everything. This stay is long. Terrible. Dehumanizing. Weeks go by. My mind goes numb, buzzing like a flash-bang has permanently gone off.

Fast forward.

I’m out, but not about. I am trying to put together a play with my theatre company: the one place I feel safe.

I go to MGH to attempt to address another piece of the problem; the "cycle of doom" as I am calling it. Chicken or the egg: Depression-->Chronic Illness-->Not Sleeping-->Not Eating-->Muscle Atrophy-->No Autonomy-->Chronic Pain-->Anxiety-->Depression. It never ends. Maybe psych meds aren’t the answer...they haven’t been working for me. I think there are just too many other factors and just modifying brain chemicals isn’t working. GvHD and/or depression, who knows, all of the above, has my body weight dropping. I’m trying to stop the shriveling but it’s proving nearly impossible. I weigh in under 100lb. My fatigue level is astronomically high. I still can’t sleep. I have no appetite and swallowing is physically difficult as my throat and tongue muscles have inextricably atrophied like the rest of my body. Depression descends like a shrinking grimy dented metal cage from which I see the entire world.

I leave MGH floating on a slightly elevated hope, somehow. Everything is not terrible. High praise from me. 

Fast forward.

I cancel/postpone/whatever verb makes you feel better about yourself The Play; for several reasons but I realize that pushing myself to do this show even for the next two months will actually kill me. I had written the script. I had already scheduled auditions. I had put down a sizable deposit on the space (which I still haven’t received back), I had started a GoFundMe for the production. I pull the plug.

I fall further into the hole.

Every morning I wake up and I cry. I don’t know why, it’s all I have. Sleep is for recharging. But for me it is a nightly battle of my body and I always fucking lose. I try to sugar coat these experiences to make them more palatable for my loved ones. But I cannot shake this dark feeling that it’s just other people’s selfishness that keeps me from taking pills again.

But the truth is, I don’t want to die. I don’t. I don’t think I am worthless, intrinsically. I believe humans are important, worthy of love, worthy of forgiveness and compassion. I am one of them, on my best days. But this body I am trapped in is more than a shitty cage. It’s a shitty cage that talks. It can’t eat, sleep, climb stairs or lift anything over four pounds. I’m wasting away. I say over and over it’s like my body is slowly dying. That maybe I’ve done my part already, and I’m not supposed to be here anymore. I’ve cheated death several times now. I’m in pain all the time. I can’t do this anymore. I can’t do this anymore.

Then something lovely happens: a day at the MFA with my mom, a road trip with a friend, watching movies, a new art project. For few moments here and there, depression fades slightly. It gives false hope to both me and the people I love, because depression always comes back, rearing, and I’m always facing an empty bed like I’m going to war every night. I am more afraid than I have ever been.

I want to talk about this solely because I don’t think I’m alone. I feel alone. God, I feel alone. I feel so fucking alone. But we humans hide a lot. From others and from ourselves. I am trying to not hide. This is really hard to write; I’m still struggling. But perhaps there is still a glimmer of a human spirit in here, who can say. All we want is to not feel alone.

The heaviness of every day. The self-hatred when I can’t force myself to eat, when I can’t leave my house because Panic has taken over and I want to disappear. I want to be in a body that works, that doesn’t want to cease to exist. I want a brain that doesn’t wish so deeply that I had never been born, telling my mother this on my 29th birthday. Watching my mother cry. I want a life where I am free.

I want a life where my Terror turns to Beauty. I want to believe it’s still possible, but that hope is more faint than it has ever been. I can’t find the words. Having a failing body, mind included, is baggage no one wants to carry around. The burden of how much this world has gone to shit the last few months; I can’t even begin to talk about it. I cry for the world: how I am unable to change it, not even in a minor way. I watch people get hurt, hurt others: and I hurt with them, and I can’t take it any longer. I watch BBC baking shows because for those 45 minutes I am anywhere else but here.  

God is either Love or all powerful. God is not both. This is also terrifying.

A couple months back something traumatic happened and it ended up with me walking alone over two miles home, mostly through the Beverly cemetery. I'm not actually sure how I managed that. Two miles. I cried over dead people I didn’t even know. I fell down a hill and cried because it took me a really long time and a lot of effort and pain to crawl to the rock wall and get up because my muscles are so weak. I touched every headstone I could. I finally asked myself out loud Do you want to end up here, silent? Is this all you are good for now? The fact that I cried while I asked myself this told me No, it’s not what I want.

I need to at least tell this story before it’s too late. Depression is a life-threatening disease that no one talks about. It can kill at any time. Sometimes there are tons of warning signs and symptoms, sometimes none at all. But I need to stress that this is a disease. In one, frightening moment of clarity right now, I am able to see it as something separate from my true Self. Something I am unable to do most days. Most days it feels like it’s all I have left, it’s what’s driving this thing. Everything else about me has died and I’m doing a really shitty job at faking being alive.

But today I threw away a shirt.

It’s a(nother) start.

Superhero

And time goes by, and we are halfway through the second month of 2017. There is much to say about the state of the world, but do not fear, I really don't have the energy to talk about it here. Not my platform.

What I can say, however, is that seasonal affective disorder is real; and has been hitting me pretty hard. With weeks without a single sunbeam to sniff at, the all-consuming grey has a certain way to dampen the soul.

Additionally I just got out of the hospital after spending four days in there for the worst bout of pneumonia that I've had so far. I seem to get it at least once every year, thanks to my GvHD and lung damage, but this one hit me pretty hard. It will be months before I'm back to where I was...which was not great to begin with. So that's hard to take. I'm fatigued and weak and sleepy- but have abs of steel thanks to all the coughing. #blessed

I also dyed my hair (the bits of it that are left: I shaved my head on January 1st) a bright crazy purple yesterday and that is giving me a little lift and life in the 50 Days of Grey. #YOLO (am I now going to end every paragraph with a hashtag? Who can say.)

But in addition to SAD (oh aptly acronym-ed...#CRYING) I'm also realizing that I really owe it to myself and to anyone who might find this blog at any point who can relate so they don't feel alone: let me say it loud and clear: GRAFT VS HOST DISEASE IS THE DEVIL INCARNATE.

Not only have you endured cancer and all that shixxxx that goes along with it; you're stuck with an autoimmune disease that almost nothing is known about and can present in myriad ways from mild/annoying to life-threatening. Just as I am typing this my left hand is starting to spasm; one of my more painful presentations- which also makes it hard to do things...with your muscles. Which is pretty much...everything.

---break to calm hand spasms---

I've also been trying to gain weight to hopefully help with a couple of things:
1) being malnourished is just not good for you. My hair is thinning, and it probably contributes to my muscle spasms.
2) I want to be strong. I need to gain weight but I want to gain muscle and get my flexibility back. But this appears to be a very very V E R Y slow battle where there are more losses than wins.

Just these past two weeks with pneumonia, I lost 6-7 pounds; which, when you weight like 100lbs to start is not good at all. It is hard for me to go up even a short set of stairs. I get winded from my crapass lungs and my leg muscles (if you can call them that. I like to pretend like they are built-in crappy leg warmers) are tired and shaky.

Chronic GvHD is a real thing. Even if no one really knows anything about it. It's real. And it's real hard. It's often invisible; people tell me I'm looking great, etc. because I'm so skinny etc. I know they mean well, but can I just say on the record: let's stop talking about people's weight?!?!?!! I don't need to be told I'm skinny and it doesn't make sense to me that somehow that is culturally appropriate to talk about but the opposite would be incredibly offensive. So let's just stop talking about it. Let's make room for people to love themselves without an "affirmation" from you about their body. #rant.

I struggle every single day with cGvHD. My eyes don't produce tears (something I'm trying to work on, but there's just so many meds...), I have weird skin discoloration/hyper-pigmentation all over my body that makes me look like I'm covered in bruises all the time. Weight loss seems to also be a symptom of cGvHD; for unknown reasons at this time (according to several studies I have read). I know I struggle with appetite and nausea and difficulty swallowing, which probably all play a part to some extent.

HOWEVER there is good news, among the grey days and hospital stays... I've decided to go back to school to pursue an MFA in Directing. I've been looking into several different programs: getting the ball rolling early for fall 2018. It's good to have something to look forward to. #excited

Just trying to remain the superhero of my own story. Which is much much harder than I could have ever anticipated four years ago. I want to remain that strong human who beast-ed through cancer and came back with super powers... but it is getting more and more difficult to stay positive. So, sometimes you just gotta start outside in and dye your hair purple.

#kbye

I've started writing haikus. they are not very good

again and again

bringing on this firestorm

deep and deep and deep

Well I got out of the hospital on Wednesday. My muscle spasms ramped up Sunday night, after the weekend of feeling my body start to fail. It’s hard for me to write about it, I’m sort of in a daze from it all still, what a bizarre week. This is not an accurate timeline of events, but more of the emotional journey of this week, just so you know. I have no idea what I am about to write.

When I get to the ER Sunday night, my spasms haven’t calmed down at all; which is odd because it’s usually how it goes, right? Your car is making a weird noise for weeks but as soon as you get to the mechanic, finally, it’s mysteriously silent. And so it usually goes for me and the ER. But this time they haven’t magically disappeared and I am in crippled agony huddled in a huge wheelchair in the waiting room, coughing and coughing and like, holding back my entire lung in my mouth and trying to not make too much noise but the contractions in my abdomen hands and legs makes me feel like a rabid animal. I am a wild drooling coughing nutcase but I don’t care because survival mode does weird things to you.

Everyone else in the waiting room disappears, I focus on trying to keep some semblance of sanity. I plead into my mother’s eyes afraid crying with all my energy begging trying to stay conscious and not fall into the abyss. The TV is trying to sell us some miracle cleaner or maybe it is golf or election projections what’s the difference, I’m clutching the left side of the gigantic wheelchair for my life, trying to keep my lungs inside my body and my body from breaking into multiple quivering pieces.

Finally I’m wheeled into a room and get IV Dilaudid, which is the only thing I want. And then as the drug spreads very literally up my arm and across my chest like a green-screened heat wave on the news, like the oozing radiating warmth of a double shot of whiskey; my body begins to loosen and I fall limp and cozy. In this moment I understand completely why people crave this feeling; it’s like being a baby again and your only responsibility is sleeping after being tucked into a warm swaddling cloth. Nothing else matters. I just want to sleep until it is over.

At first it appears that I have pneumonia, even though the chest X-ray looks decent; the CT scan shows some weird stuff in my right lung that confirms what my doctor heard earlier this week. Around 3am I’m moved upstairs and admitted. They put me on IV antibiotics and my spasms seem to be staved off for the time being, maybe there’s more Dilaudid I don’t know. The nurse sticks long ass q-tips all the way up my nose and jabs my swollen sinuses three times. It hurts like F but my eyes don’t tear because they can’t. Gotta check for Flu and MRSA.

These beds are the worst. I truly wonder to myself in my half-lucid moments how I spent months sleeping on these plastic valleys. I can’t get comfortable but Percocet is helping.

Coughing. Coughing. No Flu no MRSA.

I have two IVs, one in each inner elbow, which makes it practically impossible to move so I now have Barbie arms. I can’t drink anything or move so they take out one and move the other to the top of my wrist. I am at that point of my life story where I am asking for IVs to be moved. I voluntarily ask for more needles. Who is this girl.

I don’t know what day it is, I’m feeling a bit better, but the macaroni and cheese I ordered has surprise tuna in it. I am asked if I want to try ordering it again from the kitchen, as if somehow this one won’t have surprise tuna.

Okay it’s morning and now I’m coughing again, and though the spasms are not too bad anymore, I am afraid I am drowning and I would actually choose muscle spasms over this. I can’t believe I am actually thinking this to myself, spasms are like my bones are breaking, but not being able to breathe is much more terrifying in this moment. I can barely take a sip of air between lung overhauls. At best I feel like I can fill only the top three inches of my lungs, there is just no more space for air.

My head is itchy. My whole body is itchy. I am starting to feel really feverish. I crawl out of my plastic valley bed and creep to the bathroom mirror. My face and chest are the color of cough syrup, and I feel the heat coming off my body in my hands hovering 4 inches away. It’s getting worse. I feel I am on fire. My nurse stops the IV antibiotics, maybe I’m having an allergic reaction. My throat is shrinking like a smaller and smaller straw. There’s Benadryl. A cool washcloth that turns hot after thirty seconds of contact with my face. Trying to keep anxiety low because it will only make this worse. Finally my face starts cooling, and my airways start widening again.

Almost immediately NEWSFLASH THERE’S A DEER TICK ON MY HIP. Gut instinct makes me pull at it to get it off but it holds on and I can see it squirming its tiny disgusting legs. This sends me into full on panic attack. Trying to breathe into the three little inches my lungs are affording me. OMG get it off OMG get it off OMG get it off get it off. Thank god my nurse is able to get it off cleanly with tweezers but now I feel sick.

We switch to oral antibiotics so I don’t turn into a burning raspberry.

I was supposed to get out today but I’m staying another night. Damnit.

Another X-Ray, and an ultrasound of my kidneys and bladder for who knows why. Apparently they have on file that I have chronic kidney/bladder issues, which is inaccurate. I have no idea. Glad the ultrasounds are find tho?

They get my meds right for the first time this morning. Every single time I get meds something is missing or the wrong dose. Yesterday I took the wrong dose (as in, 4x what my dose actually is) of Gabapentin and Quinine (cue hearing loss: hello from under water for hours) so I am now vigilant to the meds and dosages. The pills all look different in the hospital so it’s hard to do the mental checklist, but today, it was correct on the first try. Praise Jehovah.

I’m getting nebulizer treatments now; the pulmonologist has a loud warm voice and caring presence. The albuterol neb makes me so shaky I am visibly trembling for a few hours after each one. But I can breathe deeper than I have been able to in days.

It seems I do not really have pneumonia, but rather the stuff showing up in the CT scan is probably a flare-up of my lung GvHD caused by some viral infection they can’t really treat. It just has to run its course. They keep me on precautionary antibiotics just in case. Thankfully my spasms have slowed down considerably.

My nephew is here, he is telling me about the bad bugs that get into your blood, and that they need to send the good bugs to kill the bad bugs. I am amazed at how well he understands these things. He talks for about five solid minutes without any pauses and finishes his lecture with “So you just have to get a laser-blanket to kill the bad ants on your bed.” Sign me up for a laser-blanket.

My hot water with lemon was actually hot this morning! What providence! But no matter how much I drink I still have a desert for a mouth and throat.

I am getting ready to go home: here’s a folder with 50 sheets of paper describing in three different ways which medicines I’m taking and when. I will have a nebulizer machine delivered to my house today.

I get home and immediately crumble. The setback of a hospital stay is suddenly immeasurable, and as soon as that survival mode wall comes down, the exhaustion and anger waiting on the other side bursts through with full force. I am angry and depleted. It defies explanation.

I am sad, I am hurting, I am sorry. I want to crawl to a place of non-existence. I want to give my feeble chance at life to someone else. I am tired of the hurting, I want to disappear.

I am sorry. I’m sorry, I’m sorry, I am saying this over and over in my head as I cry my wheezy tearless whimpers, covering my face asking for this to be over. I cry for Ian. It’s arbitrary it’s illogical. It’s a mess. It makes no sense I can’t grasp it. I want to trade my life with someone who wants it more than I do. I want to give my life to Ian. I am so sorry I am causing my family pain. My mouth and throat are so dry and I am shaking and shaking. My hands spasm and it feels they will break themselves into splintery bits.

I’m sorry. I’m sorry. I should live for you, I should want to live for you because you couldn’t. You had no choice, you had to leave. I am left here with a crippled body driven by pills and depression; I’ll never do anything I’ll never get out. I’m sorry. I want to live for you because you couldn’t. I want to live for you but I hate this life.

I am afraid.

Mental exhaustion takes over the wheel and I am despondent. I can’t move. I am lying sideways across my bed or sitting in a chair. I am coughing up shit from my flailing lungs. I am hungry but I cannot eat. I cannot feel much, if I let myself it feels like I will die. So I don’t.

My mother is scared, and I’m sorry I can’t talk. I’m sorry I can’t move. It’s not a choice.

My mother reads to me and I sleep for a long time. Every time I am wracked with gruesome and emotionally taxing nightmares. My depression rages in my dreams and it lingers when I wake up. I know they are just dreams but it wreaks havoc on my mental state.

I am afraid I will not get to my goals. I am afraid that this is the rest of my life; I am the space between ER visits; losing ground with every bad day, stumbling further and further behind the starting line. I want to be doing things, I want to be working. I feel guilty. I want to dance. But the war zone of my body is a baited trap and who knows what today will look like.

I’m a slave to medicine. I have three different nebulizer treatments. One of them I’m supposed to do every six hours, the second one twice a day, the third one as needed. So basically a full-time job with that and my other 25+ pills a day. I am getting less shaky with every neb treatment so, progress.

I write so I may be free. It seems to be one of the only places I can find these days, even though what I’m trying to describe is an incoherent nightmarish fiend. I also write this with some small hope that one day I will look back on this 

and not be this any more.

Day I've stopped counting: Updates and Winterizing my life

"Hello from the Outsiiiiiiiide. I'm freezing over; soon you'll cryyyyyyyyy" -November. 

(November is such a plagiarizing cheat, Adele, I'm sorry.)

Actually, we’ve experienced record warmth this year ("70s? IN NOVEMBER?" I rejoice). But I know its only a matter of time before snow arrives (this part's not so bad: it's beautiful and exciting and surfaces those nostalgic memories of every first-snow you can recall), the dagger-like wind picks up (and due to the fact that I am a paper-doll at the current moment, I fully expect to be whisked away to some distant land in the clouds never to be seen again. I'll write to let you know what it's like to fly, if I can find a pen and a reliable carrier pigeon), and the dropping temperature will chill both my physical and mental state into an angry Dark Ages. I hate the winter.

I remember being young and exhilarated by the prospect of this time of year: waking every morning with the glittering hope of a snow day, watching the school-cancellations scroll across the TV; building underground tunnels and igloos in the mountainous snow banks left by the plows; taking turns playing Snow Queen with my sisters--and when our cheeks couldn't take it anymore: hot chocolate and marshmallows awaiting us inside. It also meant that the holidays were approaching, obviously. Thanksgiving and Christmas: highlighted with melt-in-your-mouth sugar cookies, little red candles spinning the (German? Swedish?) nativity pyramid on the kitchen table, and the smell of evergreen wreaths when you walk through a doorway. Actually now that I've written all of that, it doesn't seem half as bad. Nostalgia is a very powerful thing.

But as you get older and there's no school days to be cancelled, snow means shoveling, scraping ice off your car with numb-ass hands because you can't find your gloves, sitting bitter and freezing as you wait for the engine to warm up, and for me: being perpetually late everywhere because I always forget to factor in how much longer it takes to leave (bundling up the layers, and readying the car, see above). I've also learned something about myself in recent years: I hate being cold. Not just that it's uncomfortable, but I actually get angry. Like really, really angry when I am cold. It's as if my brain shuts down in extreme efforts to focus on staving off hypothermia, and everything and everyone is a noxious distraction from my every cell trying to zip up its tiny winter jacket that the wind seems to blow right through. Not to mention the time-change and ever-shrinking hours of daylight. As soon as I'm cold, I turn into an ogre-ous (this is now a word. You’re welcome, English) form of Bekah. It's terrible, and I hate this version of myself. 

And on top of all this (the impending Doom), I’ve also had some not-great (read: the worst.) life things in recent weeks. I’ve written before about my muscle spasms. Well, they’re reaching an all-time high/low, whichever/whatever. The New Deal: about a month ago, my spasms went (quite suddenly) from a more intermittent irritation (though still excruciatingly painful when they’d happen) to a full-blown life-takeover. Every single day was a time bomb, counting down a spasm clock with the launch procedure completely unknown to me. All I knew that was at some point every day a part of my body will give up the ghost and submit me to torturous agony, often setting off a chain reaction as other parts of my body join in on this...escapade of debauched fate. (I am not exaggerating. I have a high pain-tolerance and I try very hard not to embellish my experience of pain. I have always been this way. This is the same person who unknowingly tore her (first) ACL and couldn’t properly walk for 3 weeks and then couldn’t squat, kneel or go up stairs without pain for over 8 months, but thought she’d just ‘power-through’, and then ignored red-flags of a serious medical condition, aka Cancer, for almost a year after that...dumb. So. Not an embellisher.)

And then every night, frequently hourly: spasms jolting me awake and I try to untangle myself from a blanket mess/straight-jacket to launch out of bed to try to quell the pain that I can only describe as my muscles attempting to break my leg bones. Literally every hour. Clockwork, I tell you. This extreme change in the frequency and intensity of the spasms scared me, and I spiraled real fast into a very dark depression. My life was being taken over by an evil dictator who lashed out erratically, but with enough regularity that I had to cancel, reschedule or amend all plans and appointments for weeks- which in turn caused isolation, which heightened my depression. And in addition, I had recently started taking prednisone again in a seemingly last-ditch effort to regain control of this body spinning off the road. Prednisone is a steroid/archenemy/med that doctors throw around like candy. Sure, it can help a lot of things in a lot of cases, but the side-effects both short and long term can be very bad. Very very bad. Read: bone necrosis, for one. Steroids also F with your brain and intensify any emotion you experience. Read: Depression. So, yeah. Spinning wheel of Death, Brain-side.

I was maxed out. I was maxed out on the pain, and maxed out on dealing with it. Every time felt like the last time I could handle it, I just couldn’t do it anymore. I didn’t want to do it any more. Most of my days were spent wishing I could just be knocked out or put under so I wouldn’t feel it. When I wasn’t just straight up crying (or screaming. I hate to admit this, but I sometimes scream into my pillows so I don’t wake neighbors. These muscles are not messing around. At all.) I’d just be asking god or my body or whoever could be listening: Why? WHY? and then No no no no no no. Your brain can do some pretty weird stuff when you’re in pain. I compulsively talk to myself because, psychology. “You’re okay, you’re okay, you’re ok, it’s okay. It’s okay its okay you’re okay” I call myself sweetheart, honey, my love, darling. And then sometimes it’s the opposite; I curse out this god-forsaken body with a string of uncreative obscenities.

And my never-ending question is How HOW can non-existent muscles cause this much suffering? There’s nothing even there to see (ie. paper doll), let alone spasm to the point of my bones feeling like their going to break. It feels like my body is trying to kill me, again. Cancer didn’t seem to work, so here’s the next attempt. Or perhaps my muscles are in mutiny and seeking to prove that they still exist in spite of me. I don’t know.

Well, finally after about three weeks of these shockingly quick-changing unforgiving circumstances and my mental state spinning out: I had one night of spasms so horrific, lasting so long and attacking new and larger muscle groups that I had no way of calming down or stretching to release, my parents took me to the ER. Of course as soon as we get to the ER my body had relaxed, as is the way of things (I can’t really move when a spasm hits, so we had to wait almost a half-hour in order to get me to the car). I wasn’t upset by this, I mean, not really because I didn’t want to be in pain any more. But it’s also difficult to explain to someone that, just a few short moments ago I was in the most intense pain I have ever experienced, by way of a now pacified and complete hypocrite of a body. The only thing I had to show for it was that I was totally exhausted. The fatigue following these episodes is obscene. They nodded. They took my blood. And my white count was high. Read: infection.

They did a chest X-Ray which revealed that I had pneumonia. I was admitted to the hospital that night and put on Big Gun antibiotics to knock it out (TMI alert it makes your pee smell terrible). With my still being immuno-compromised, pneumonia is nothing to mess around with. More X-Rays, more antibiotics, more nights in the hospital. What’s amazing is that I wasn’t presenting any signs or symptoms generally associated with pneumonia. Nurses and X-Ray techs kept asking me how my cough was doing, and I always had to answer them “I don’t have a cough” to which a quizzical look was always the response. Especially when follow-up questions like “Wheezing? Fever? Shortness of breath?” also got the headshake. What’s also amazing is that the muscle spasms started clearing up as the spot on my X-Ray did. They didn’t go away completely, but the regressed to about where they’d been prior to the Three Weeks of Hell. I tried to be active, walking laps around the floor- because that seems to help keep my leg spasms at bay- and sitting in a hospital bed wasn’t helping the cause.

It wasn’t until the night before I came home that we (well, my mom brilliantly sleuthed out) put together what I see as a pretty clear understanding of what had just happened to me. Why my spasms got so bad so suddenly, and conditionally why my mood spiraled out of control with it. Of course now in hindsight I do recall prior to my transplant, my doctor talking to me about chronic GvHD, and that if I did happen to have it (which was likely, given I had an 8/10 mismatched donor), that it would likely have “flare-ups” throughout my life, usually when I'd get sick. This happens because when the body gets an infection, the immune system “wakes up” (as it should) and goes to town on the infection, which causes symptoms (stuffy nose, cough, etc). At least, that’s what a proper immune system should do. In my case, because my immune system is transplanted and not my own, when it was triggered to “wake up” because I had developed pneumonia (hurrah), instead of attacking the pneumonia, my immune system got confused and started going to town on my muscles instead.

Hopefully my immune system will eventually feel “at home” in my body and not attack healthy things (like my mini muscles). The goal of this transplant is that the donor immune system will do what it’s supposed to do: keep my body free of infection, and keep cancer from returning. That’s called CURE. They say five years in remission is when cancer patients and doctors can start saying the word “Cure”. But I’m not so sure if it’s the same numerical path for me, we’ll see. The hope is to be able to get off of immuno-suppressants so that my immune system can reach it’s full potential to guard me. That may never happen, especially because I have a mismatched donor, and GvHD may be too intense (and dangerous) to ‘take the blinders off’ my immune system completely. But that’s the goal. For now, knowledge is power. Knowing and understanding what just happened to me has released some of the anxiety and depression that wrapped so tightly around me for the past month. If my muscle spasms (or my other, somewhat-less-frightening-but-still-obnoxious presentations of GvHD: so far I have five other ones) ever start to increase like they did this time around—I’ll know, I probably have an infection and my immune system just doesn’t know how to “do this” yet. The scariest part of it all (besides how bad the pain was) was not knowing why it got so bad—and that it was so suddenly and completely taking over my life for no apparent reason. Now I know.

I’m also taking other steps to build a healthier identity. It can be very disheartening when I look back over the year and it’s easy to chastise myself for not being further along than I am. I’ve fallen off the 2015 Year of Health horse a bit, but I can’t let that control me. I have to start where I am. I have begun PT for full-body reconditioning. A harrowing task, but I need to do it for my health and sanity and soul. I am starting to see a new psychiatrist and therapist closer to my home so I don’t need to drive into Boston so often. I am actively trying to gain weight (bacon). I’m doing research and learning how to be my own health-advocate (yup, even 2+ years into this thing and I’m still learning how to do this). I’ve seen a new transplant doctor at MGH for a second opinion, and he was very encouraging that we are NOT running out of options to deal with my GvHD- something that was told to me by my current team at DFCI. I am very grateful to my DFCI team and thankful for everything they’ve done for me, but I’ve had to learn that not everyone knows everything. It may appear obvious, but there you go. Lessons.

We’ve also found a clinical trial researching chronic GvHD that is recruiting new participants. It’s through the National Cancer Institute and the trial is based out of Maryland, so I hope to head down there at some point to be a part of their research. In their list of chronic GvHD symptoms, muscle spasms wasn’t even listed (my other 5 were) so I almost feel its my duty to science and other transplant patients to inform the research about this other form of GvHD #science. I know how important it is to not feel alone, and I want other patients experiencing what I’m experiencing to know that. So, to Maryland I go! I’m planning to contact them this week to start the process.

I am also drawing upon the lessons on self-care from last year, remembering what pulled me out from under last year’s depression: surrounding myself with beautiful, life affirming things: poetry and music, doing arts and projects, intentionally seeking out people and waking up earlier to catch more sunlight. Active self-care is work, but if I don’t do it, I will be doomed to the catastrophe of Winter. So I am Winterizing myself. Building a network of people I love, reconnecting with people I miss. Rilke and Rilke and Rilke. Making things with my hands when they let me, and leaving them in peace when they rebel. Allowing and reminding myself to be where I am, free of judgement and self-loathing. Stretching my muscles, watching the sky, breathing deeply. Winter, there are no strings on me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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