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 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