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.