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 303: 10 months, and all the things

Hello and welcome to 10 months since transplant.

I can hardly believe I'm even typing that number: over 300 days. 10 months. Ten months. 2 more months will be a year.

Fortunately, I haven't been writing as much here because I've been busy living my life. Again, finally, finally. I am not home-free yet: I can't start work until October; I'm still on anti-rejection meds, prednisone and tons of antibiotics, and even come one year on Sept 26 it's another 4 years until I am considered "cured" of Leukemia. But I am now taking stock of my life as it is right now-- and compared to what I was four months ago, it's hard to believe that things have changed so much. I am here.

I have started going out to public spaces (if they aren't too crowded), cafes, restaurants, friends' houses, I shop for my own groceries. I have been frequenting my favorite bakery, and though I am sort-of cheating when I order their amazing smoked salmon sandwich (it has raw things on it, which is not exactly "kosher" for me right now), it is so worth it. (don't worry mom, I've only gotten it a couple times; I think my odds are still good of not getting a bad sprout)

My taste is back to normal (though there are some things that I do not like anymore!? how strange), the body aches are diminishing (great thanks to my massage therapist, Bambi. And prednisone.) My hair is coming in, very very curly, like never before! Cue the BRILLO PAD

That photo is from a couple weeks ago. Two days ago I shaved it all off again, in hopes that it will start to thicken up more. Here's one from today. buh-bye baby fuzz, GO ARMY

In other news, my theatre company: the 5th wall, put up an original production last weekend: The Quiet Room. (aaand, shameless plug for our website. For pics and more info about us: the5thwall.org) We wrote the script over a few months at the beginning of the year, auditioned and cast the show with both known and new faces, and all beautiful minds, and rehearsed hard for two months. It was an amazing experience the whole way through: the ups, the downs, the grueling heat, the extreme fears and anxieties, the unsurmountable joy… And being a part of this show was the most normal life activity for me since I was diagnosed. When I am at rehearsals, I feel alive. Completely in my element. I truly forget all this shit and just do what I do best (sometimes to the detriment of my health; which is why I love my friends even more for always pointing me to my water bottle). I feel very lucky to have found something that I am both good at and also enjoy; and can also afford to do for the time being. It is not a perfect model: there are most definitely nights when I feel so lost, like the path is blocked: creatively or physically or emotionally. But it is the striving through these crazy obstacles that make it important, make it what I love. A cliche: but it is a labor of love. Through and through. And the messy nature of theatre is one of its most beautiful qualities. It gets directly at the immediate heart of life, relationships, the self, the other, love, struggle, trauma, perseverance, love, love, LOVE-- even in its very method of creation. Abraham Heschel said in an interview a few weeks before his parting from this world: "Above all, remember that you must build your life as if it were a work of art." There are a couple of interpretations of this, but the one I find to be most meaningful is this: build your life in the same way that you build a work of art: Through the mess and confusion, continue to reach for clarity, beauty, honesty, truth.

This show and this company is life-affirming for me. It reminds me why I want to get through this...tough patch. Not for any one person, not for a single one thing or one relationship, but because there is clarity, beauty, honesty and truth. I have to live for that, for myself, and for everything that is bigger than me. This is something that I have been struggling with; in spite of how strong I felt for so many months after being diagnosed. I am learning about myself and how I deal with things and people and life struggles. Trauma does that, I think. It forces you to deal with things immediately, and then you are left thinking about yourself in relation to it in the aftermath. I have learned that I am a fire-fighter. Trauma hits, and I go into survival mode: Get it done. I make jokes to get myself through, I do whatever it takes to get through. And then, as I have seen and experienced and am now realizing: something happens when the trauma is long-term. I start to lose my footing. I start to lose my drive. I guess probably anyone would, I don't really fault myself for this. And of course, my situation is extremely concentrated: spending hours alone, often in physical and/or emotional agony over the winter is not many people's experience. However, somehow I think this can be invisible-- even in people we see every day.

I am thinking a lot about how I relate to people, the mechanisms that I use to deal with things, especially to protect myself. It would be foolish for me to believe that I don't use mechanisms; we all use them-- learned from those who came before us, or in reaction to those who came before us. No one is exempt. In a way, it allows me to be more forgiving of myself and of others, for all of the folly and helpless failings. In the words of a character from The Quiet Room: "We find ourselves here, among them all, these unsolvable puzzles of things and people, just being." Just being. Trying to protect ourselves, experimenting with life and choices and our bodies and minds and other people and experiencing the vast spectrum and gamut of human emotions all at the same time, all of the time. It's messy. It's theatre.


I will take the sun in my mouth
and leap into the ripe air
Alive
with closed eyes
to dash against darkness.

-- ee cummings