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.

Published, Cancer Planet, Expectations and My Precioussss

Hello hello hello. NEWS FLASH I have good things to report after a long spell of not-as-good things.

I have the pleasure of being published by elephant journal again, and you can find the article here. Feel free to read it and pass it along to anyone who you'd think would appreciate it. The first time I was published by elephant journal was back in 2014, and this new article (like the first) is an adapted excerpt from this blog. The original post was written at my one year post-transplant anniversary. This article, To the Girl in the Waiting Room, holds close many of those same words- but I've re-written it a bit from the perspective of my current self: a little over two years out.

With another year under my belt, I was...well, not surprised really, to have a lot in common with the one year old me. I'm still struggling with a lot of the same things. Depression, frustration, etc. What I didn't really expound on in the post (both the original and in the new version) is the real let-down of being "one year out" (now "two years out") and having your expectations of where you should be crushed to pulp. I mean, the sentiment is there I think, as it does have a lot to do with depression and I believe it to be a pretty common feeling among cancer patients. Or anyone, really. We have expectations for ourselves: where we will be, what we will have, what we'll be doing... We have expectations for other people: what they'll do, how they'll treat us, how they'll react to us or a situation. And when the reality sets in and those expectations are not met, it can be crushing. Sometimes its a close miss, other times it's like you're on a different planet. So here I am on Cancer Planet. Yeah...Not the planet I was expecting to be on at 27, definitely not the one I thought I'd be circling the sun on for the last two and a half years. But even on your planet, Cancer Planet not excluded, you develop expectations of how this will go, where you'll be in some amount of time, etc. ...And then a giant meteor comes hurling out of nowhere and there's no Bruce Willis to save you.

Expectations are faulty: when they are unmet, they cause animosity in relationships, they cause self-doubt, fear, depression. And it's not like we can always help it either. So many of our expectations are subconscious, and sometimes they operate entirely in that realm: the subconscious mind builds these expectations, the expectations are not met, and then we're angry, frustrated, sad, upset, pick your adjective, and we may not even realize why.

I've been working to try to peel away my own layers in this respect: to have a deeper understanding of my own emotions in all situations in which I find myself. Sometimes it's difficult to understand- why am I feeling anxious? Why am I having a mental breakdown right now? Why am I angry? It's not always (ha-ha, almost never. Let's be real.) a rational one-to-one ratio of symbolism or set of chain reactions. But I am really trying to 'unpack' as they say, my emotions and try to get to the root source of them. Why am I anxious? I may not be able to go through this mental game while I'm having a panic attack- but maybe after it's over I'll think back and see if I can figure out a trigger, whether exterior or interior, that may have set it off. When I'm angry or frustrated (again, maybe not so much in the moment...work is work is working on it): what is this really about, under the surface? What is the expectation that is not being met? And what can I do about it?

My mother, in her great wisdom, told me long ago that almost every relational problem (people interacting with people: it can be corrosive!) stem from unmet expectations. I have discovered time and time again that this is very true. Whether or not those expectations were conscious, unconscious, rational or irrational... When they are not met, we respond with a negative emotion (again, pick your adjective). And I think, to dig even deeper into this, these problems really come from the fact that we are individuals. We are intrinsically different from each other. There is NO ONE like you. Not one other person who is like you in the entire world. One of my favorite quotes from Carl Sagan (of which there are many) is this:

"If a human disagrees with you, let him live. In a hundred billion galaxies, you will not find another."

And this gets at a True thing: each person, with their eccentricities and flaws, is singular. And I think if we really take this idea and honestly hold it in our lives: we will be overcome with awe. Human beings are incredible. They are also incredibly complicated, and our emotions get more complex as we mature and are able to simultaneously exhibit multiple deep-seeded emotions at once. It's a really weird and often irritating thing that we do.

So, to backtrack here a bit after all that rambling- I'm trying to understand and place myself as a part of this Awe. I disagree with myself all the time. "C'mon body, you stupid stupid lump!" "Seriously, brain? You wanna go there right now?" *insert panic attack* "Are you kidding, muscles? How can you cause so much--AHHHHHHH" (muscle spasm, tears, anguish.)

But I'm gonna let me live. Because in a hundred billion galaxies I will not find another.

This is not meant to appear or manifest as self-love to the point of self-worship. I suppose there's people who struggle with that *cough-Trump-cough* and that's a different thing. I'm talking about the self-hatred that exists within so many. We need to view ourselves and each other as innately precious and individual. And we need to take the time to honor that preciousness by trying to understand ourselves and others better. Our true motives, even if the result is flawed. After the panic or anger or embarrassment subsides, to take a minute to figure out the under-workings going on there. And perhaps, with enough practice, to be able to do this sort of mental exercise in the midst of difficulty: to see ourselves as precious, as the other person (if another is involved) as precious, and act accordingly. To take care of what is precious.

So here's to you, My Precioussss.

No but really.

In other news, anti-depressants can really work. I started a new one on top of the one I was already taking, and it is helping a great deal. I am very pleased to to say so. After a very long time of a hard time, it's nice to have a more steady emotional state. At least, without the increasing depths of the low times. Those haven't been back for a couple weeks.

And I'm going after my goals. I'm writing more, again, as I'd hoped I would. I'm exercising (AKA KICKING MY ASS INTO GEAR OMG) and building muscle and increasing my flexibility. Every morning I wake up (IDK how long this will last; I hope a long time!) and I think: NO STRINGS ON ME. Going after my goals like a mofo. YOU HEAR DAT EXPECTATIONS? But I also know it won't be a constant happy road. I'll hit bumps, plateaus and valleys like anyone else. But I'll let me live. My Precious.

happy 2016 from my Depression Unicorn

I've made some resolutions. Actually most of them didn't start as of January 1. I started them last year, but this year I want to see them come to full fruition. My "motto" for 2015 was "Year of Health" and while that was hopeful and starry-eyed, huge portions of that goal started slipping away as the year went on. No.1 I became a skeleton, weighing in at approximately my 7th grade body weight. No.2 My muscle spasms intensified and took over my life. And No.3 The combination of these increasingly serious physical symptoms resulted in possibly my lowest depths of emotional despair, ever. The dream of health seemed to slink away into the night, and I couldn't stop it from going.

At the present moment, though, I feel I can see things more clearly than most of the time; whether it's the espresso talking or not, I don't know, but here we are. I've come up with my motto for 2016: "there are no strings on me" in which I will attempt with great effort to seize opportunities and rid myself of self loathing and doubt.

I haven't held much back in this blog, though the droughts between posts I can tell you are often due to depression and general lack of interest in anything. I also have this feeling that every time I have something to say as of late, it's generally depressing. And I hate myself and I hate myself. And I hate that I am not myself, so much of the time. But the honest capital-T Truth is that I don't feel like a warrior anymore. I absolutely do not say this in any attempt to get reassurance from anyone. It doesn't help much to be told that "You ARE strong" "You're still a fighter" Yeah I'm fighting. I'm fighting but I'm fucking tired of it. I'm sorry to let people down in this mission to be the face of warrior-woman-defeats-cancer-with-smile-on-face. And I know people say "you didn't let us down" and maybe that's true IDK I'm not you. But I feel like I've let myself down. I want to be a fucking warrior but instead I'm worn out. I'm just over it, maxed out, DONE. And it makes it worse that I know other people have harder situations than the one I'm currently facing and they still have smiles on their faces, or at least hope. I'm trying for hope, trying to find it again. I want to believe it's not lost and gone forever. And yeah, people say, "you're still in there, B". B has taken a weird turn down a moody depression alleyway and it's pretty damn dark down here. When people ask how I'm doing, I can't exactly lie. I'm cursed, remember? Instead I weigh my true feeling against the relationship with the person who just asked and decide between frank honesty that usually ends up something like regaling my rampage through the land of misfit toys whist sort-of chuckling, or some vague utterance like: "I'm okay. Sometimes." she said, furrowing her brow and bobbing her head like an overeager dashboard Santa. Either way, still a defeated sad toy in most situations.

But now it's 2016, and we're feelin' good. Sometimes.

Again, it's not all bad. I laugh, sometimes. I had a good Thanksgiving, Christmas and New Years Eve. But I'm lackluster fist pumping at a (really sad, as in lame and despondent) pity party. Depression is a barbaric animal. It comes without warning, and even for someone like me who prides herself on being somewhat self-aware it still takes me by storm. And it's also a form of depression that I haven't dealt with before; my depression unicorn. A sadistic, aberrant unicorn... You know it's that thing where you have panic attacks due to the slightest provocation, or at no provocation at all. I'm still learning my triggers, I guess. Just sort of hard to dissect all possible things that could cause said panic attack while in the midst of it. I've dealt with depression for a lot of my life, and I've had anxiety attacks before, but not at this regularity. I also experience this odd sensation of paralysis. It's really hard to describe because it's completely irrational. I know this even when it's happening to me. But sometimes I shut down and curl into a ball on the floor crying for no real reason. Sometimes it correlates with when the sun goes down and BOOM down for the count. Or, I have plans to go out with friends- and even though I really really want to go (and should go, because in all likelihood it would be good for me, an extrovert) I can't seem to make myself leave the house. I sit in my coat with my shoes on, and don't move. Other times it's small movements like getting up off the floor or uncovering my face that I just can't do. I'm at war. Half my brain is telling me to get up GET UP. GET UP. MOVE YOUR ARM. DAMN IT MOVE YOUR LEG. While the other half of my brain, the part responsible for action, apparently, is unplugged and/or unresponsive.

I'm not sitting around doing nothing about it, though. But that has a huge part to do with my parents being supportive and helping me do things like make phone calls. I'm trying to get better. I just don't know how anymore. And I feel really really tired of trying. And I feel like a little shit for feeling that way, when so many people with worse medical conditions would love to switch places. And I wonder why I was given this chance at a new life, shitty as it is right now, when so many others don't. And I should be happy, grateful for this chance. I am grateful. I guess most of the time I just don't know why things happen the way they do. I guess there really isn't a reason.

It's just...recovery is taking way WAAAY longer than I ever was sick. and even though I was told this would take five years out of my life, I guess I didn't really understand what that meant, or I thought it would be different for me because I'm a UNICORN obviously and not 100% human and fallible. I am trying really hard to not let this discourage me, but it does a pretty good job. I'm doing physical therapy and it's usually been empowering. But I'm easily disappointed by this body of mine. I still get winded going up stairs. I'm frustrated that it gets sick so easily, and takes 6x longer to bounce back from anything than the average person. Just as I am finally getting over something I'm sick again already; plus its winter now so it's not even hard. Calling all germs, viruses, bacteria: come at me boys and girls. You love me, apparently.

But I do have goals. I'm trying to hold this year lightly in my hands, to not expect too much from myself. But I also need discipline to reach my goals. Even though they are not complicated in nature; they are complex to achieve and will take effort. But I'm trying to keep "the list" short so I may actually have a chance at accomplishing these for real.

Resolutions for 2016 there are no strings on me
1) Write more. Make this a habitual practice and dedicate time and energy to the discipline.
2) Stretch every day. I'm not kidding, B.
3) Build up dem biddy muscles. See addendum to #2
4) Travel
5) Dance
6) Love thyself, even the icky moments. Because feeling something means you are alive and capable of love.

Goals for 2016 there are no strings on me
1) Expand the knowledge of your craft. Take classes, learn, grow, get into dancing shape
2) Produce art
3) Eyes on the prize: January 2017 Gecko physical theatre masterclass, London.

Let's revisit this in one year from now, shall we? See how we did?

ps. and B, let me re-iterate that last resolution again in case you missed it: Love thyself, even the icky moments. Because feeling something means you are alive and capable of love.

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