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

Day 722: Anniversaries

Today holds a lot of things inside it. I've written about it before: anniversaries can be so multi-faceted. It's the second cooled down day that we've had in a row, and I'm drinking tea and wearing my coat in the house so it must mean Autumn has arrived: as New England seasons usually do, shocking us after the intense heat wave of last week. Fall winds are whispering at our doorstep, getting ready to color the trees and cover the ground with crunchy autumnal love. I am thinking of so many things of the past. Nostalgia hovers in the changing of seasons, I think; especially this one, Summer to Fall, every year.

Today, fourteen years ago, the Twin Towers, a plane in DC and a plane in PA fell from the sky, and our nation felt the heaviness of it all- the heaviness of terror, and the horrible evil that this world harbors in dark corners. Somehow we are now here, slightly older, remembering that day with a sadness that somehow seems to refresh itself with grief every year. Yes, let's never forget. It also brings to my mind the atrocities that take place to this magnitude every day, all over the globe, even as I write this. Let's never forget that, either. It can be depressing, to think of the world this way, to see it through the eyes of its atrocities. But in order to carry on in my life and not be paralyzed, I try to choose to see the world through a different lens.

Today, 67 years ago, Isabel Sadler married her high-school sweetheart, Louis Plavidal and continued a family tree that eventually grew to where I am now. This stud and stunning lady were my fearless, loving, hilarious, light-up-the-room grandparents, each of them fulfilling those words in their own way.

My Grandad, Lou, was a funny, well/loudly dressed party-starter; a tennis-playing, go-cart-racing, sail-boat-wielding, bird-hunting, model-airplane-building, dog-loving, DIY-fix-it and chili-contest-contestant, with a sweet tooth that would make dentists around the world run and hide. His famous undoing were jellybeans. As kids, he would sneak us tiny colorful gumballs from his gumball machine that looked like an old-timey gasoline dispenser. They were always hard as rocks, but we loved them anyway. He brought out and put together the intensely detailed and delicate train set at Christmas-time that would run around the tree, and was well known for re-gifting things he'd been given from work-related clients etc (He worked for General Electric). Was this a predisposition from being a child of the Great Depression? Was it in jest? Hard to tell. We laugh about it still. We always (and still to this day) have a Christmas puzzle that the family works on together, and he created a mode of puzzle-ing called "Touchy-Move-y" which was instated towards the end of the puzzle, when there were only a handful of pieces left, and you weren't allowed to touch a piece unless you knew exactly where it went. Now picture a bunch of people hovered over a game table with their hands behind their backs... He was also well known for having approximately 900 projects going at the same time, most of them never fully finished. He loved boats and cars, and had his share of fixer-uppers, including a 1965 two-seater Lotus with a loud engine that he would take turns driving (flying) us three grand-kids around the neighborhood, probably to Granna's somewhat dismay at the speed.

He had a billion lovable disaster stories ('lovable' and funny always later, after-the-fact of course- though he probably always found the humor while they were happening...everyone else involved probably didn't until much, much later), always told and re-told at every Thanksgiving, especially after a "drinky-poo" (CC Manhattan on the Rocks- coincidentally my father's drink as well). Most involve trailers and their untimely unhitching, tires coming off and rolling past them on the highway, and canoes wrapping around rocks in rapid waters. He was an adventurer for sure. Their house was filled with his duck-decoys, and always smelled of old magazines and books. He had a great laugh, and when he really laughed: with eyes squeezed shut in a great guffaw, maybe a tear peeking out of the side of an eye...I can hear it right now.

My Granna, Isabel, was a gentle and kind, often quieter and observant counterpart to my Grandfather. She was a cold-peanut-butter-sandwich-making, health-conscious "you-have-to-drink-a-glass-of-water-before-that-juice"-saying, at-the-same-time-coffee-ice-cream-loving, read-to-us-in-the-hammock, and later in life: oatmeal-colored-everything kind of gal. Before I was born, she would follow her husband on many a trek into the wilderness and to dressy dinner-parties, and I imagine she held her own quite well. Pictures tell the tale of her classic beauty, which she let shine through simple yet elegant attire. Later on, we found several decadent sequined and feathered masks in their attic, apparently worn to mask parties, as this was something people actually did back then-classy as heck (Granna would not approve of me using the word "hell" there, even though I believe it to be appropriate). Granna had a stillness to her- not in the sense of not moving, but just an understated composure that we are hard-pressed to find these days. She was a smaller woman, but the thought of her smile and round little cheeks fills this giant kitchen I am sitting in right now. Later in her life her laugh dialed down a bit and sounded like a little cooing owl (I know, owls don't coo. It's just, bah it's the best I can do to describe it), with her little face squinting up (also not really a saying. Okay, just bare with me and imagine the cutest little lady "hmm-hmmm-hmmmm"-ing with her eyes and mouth closed tight like a pin (is that a saying?) at things she found funny). She also was famous (well, certainly family and friend famous) for her to-this-day hilarious cat joke. If you haven't heard it, I'm sorry. I can't transcribe it; so you'll have to ask me in person. I do a pretty good impression.

She was a very intelligent person, and it wasn't until much later that I learned just how smart she was. Had she been born in a different era, she would have been a scientist, probably in the field of particle physics. We'd find science articles marked up with her gentle scrawl, readings about sub-atomic particle discoveries and general cosmology. I reckon that if she was still alive and we could talk again, we'd have many very interesting discussions. But instead of following what was apparently her hidden dream, she studied home-making in college, as was the way of things back in the 50s. As a child of the Great Depression, she washed and saved aluminum foil, and rarely wasted anything. The phrase I recall most heard from her (besides the cat joke that we'd plead for her to re-tell all the time, even up into the last years of her life), that I use all the time in my life now is: "everything in moderation." Which is how she lived her life. She also had an unwavering faith in God, which I admire, even if it is from (somewhat) afar and from a different place. I have learned a lot from watching all of this growing up, re-thinking over it, and re-examining it now as an adult. There are so many things I admire about my Grandmother, but her gentleness, steadfastness, and considerate moderation are towards the top. She was a magnificent woman.

We'd gallop around their ranch-style house and modest backyard, color with crayons in the aqua kitchen, play with Grover- their big yellow lab with quintessential dog breath, pick the delicate coins off the dried money plants, swing in the shaded hammock, work on puzzles and play dominoes in their mustard carpeted living room, and venture into the dark basement where Grandad did his projects. Much of my early writing was done on old sheets from yellow lined legal pads in that house, and especially in the basement behind the many-year-out-of-use bar towards the back near the sliding door. I'd sit on the dusty (a pleasant mix of real dust and wood dust) floor and write stories about lots of things, but a lot about a young girl and her adventures to summer camp where she would discover magic in one form or another. [side note: Where are those stories now? I wish I knew where they went off to, there's probably a short story in there somewhere, or maybe it was just digested and regurgitated conglomerations of stories that I was also reading at the time. Hmm. Well, we'll never know.]

Today I am remembering these two great people. Even though they both passed away before I was truly able to really appreciate them as human beings (I think), I consider them and who they were now, and I feel humbled and blessed, and tearful. There are many wishes I have about them, wished I had played my grandfather in tennis (he probably would have won, though I think I could have given him a run for his money), wished I could talk to my grandmother about cosmological ideas.

So today is full of anniversaries, these are just two. Both remind me of what being a human means. Both challenge me to leave this world better than it was when I found it.

 

Young and beautiful Isabel, whom my mother is the spitting image of.

 

Isabel (on left) and Mickey, her older sister (Easter 1947, the year before they got married)

 Lou and Bel and my two uncles Gary and baby Rick, before my Mom was born.

 

and, my Grandad, the ultimate jokster. I can hear Granna now: "Loouuu."

My sister Rie is the namesake of my Grandmother (Rie's middle name is Isabel) and they always had a special bond.

 

This is me three years ago, sporting one of my Grandad's spectacular pairs of pants. He was a colorful dude, in all the ways.

There's many more pictures, of course- these are just the ones I could find easily thanks to social media. There is one picture in particular of Isabel and Lou's first Christmas that I couldn't get my hands on early enough for this post, but it's probably my favorite picture of them. Perhaps I'll find it and add it in later.

Love you both.