When you donate bone marrow, you might have a liter or more of fluid pulled out of your body in under an hour. Post-op, you will probably become 1. anemic and 2. dehydrated. The breathing tube they stick down your throat exacerbates your thirsty feeling, and it feels like you have strep throat and cotton mouth and you feel like a raisin all in one go. Also, you have IVs in both arms (full of ‘rehydrating fluids’) that make it very hard to bend your wrists and elbows, so someone is probably sitting next to you the entire time with a cup of juice with a straw dangling out of it for your suckling pleasure. Also, if you are a anesthesia lightweight, you are high as a kite and it feels like you have been beaten by a gang of enthusiastic teenagers wearing steel toed boots. Your sore little body will refill with the rehydrating fluids and juice like a little chicken breast being pumped full of saline and phosphates, and when you realize you have to pee, it will be about fifteen seconds before you literally explode. Having to pee when you are being intravenously pumped full of fluids is like falling asleep with sleeping pills; you never feel it coming, it’s not natural, and you better be in the right place at the right time.
When I find the words to express this, my nurse, who has received advanced training in bumping patients off her ward as quickly as possible, suggests that I try getting up out of my gurney and walking to the toilet (a half dozen steps behind me) all by myself.
Under normal circumstances, I would take this moment to laugh hysterically and sarcastically and shame this woman for her ridiculous suggestion, but I am discombobulated and instead I try to tell her I can’t but I find myself listening to her ‘this is how we get up out of the bed’ instructions and nodding. I’m there but I’m not. There’s a ten second time delay on my thoughts. I know that this is about to end in disaster, but there I am, grabbing the nurse’s elbow, grunting, and attempting to sit up.
It actually all goes according to plan (I know I’m talking about this like I’m Indiana Jones entering the Temple of Doom, but bear with me. The toilet might as well have been in Kolkata.) and I somehow find myself sitting on a toilet, sore and surprised.
But when I am peeing, something happens. I break out of my drunken post op cocoon of warmth and anesthesia loveliness and the little bit of blood left in my face drains out and I suddenly want to throw up, and I realize I am freezing, I realize I have a migraine, and I realize that four holes have been drilled into my back and they are on fire. My nurse mostly drags me back to my bed, and I shiver violently until they can find some more heated blankets to throw on top of me. Maybe that was a little too soon, my nurse cheerily mentions at some point. I don’t answer, because I am consumed with not dying. I am chattering so hard I can’t speak and my head feels like a bowling ball and my mind is the metaphorical equivalent of a not especially impressive dustbunny.
I need a blood transfusion.
This was mostly expected– the woman I did this donation for needed a large donation, larger than what I could safely give, and so I was slated to donate the maximum possible amount of bone marrow my body could reasonably be expected to part with (given my body weight– around 1100 mls). The marrow is retrieved by drilling into the hip bones, through the bone and muscle, and the bone marrow is extracted with a hollow needle inserted into the cavity. The recipient will then receive my marrow, which is full of my kick-ass healthy, normal stem cells, intravenously. The general concept is that yours and my stem cells can become any kind of cell, and once they enter this woman’s body, where her bone marrow has been nuked out of her through high dose chemo and radiation just prior to the transplant, they will realize that they need to become blood cells, and they will multiply like they do, and give her new, awesome, healthy blood/bone marrow, etc.
The high dose chemo and radiation can kill the recipient (it wipes out her entire immune system; the recipient is quarantined while this is happening, and the slightest infection can turn into pneumonia and become fatal). No one is allowed to tell me if my recipient has made it far enough along to receive my donation.
This procedure makes a donor anemic. In anticipation of this moment, the donor is asked to bank a unit of blood for themselves prior to the surgery. Two weeks ago, I visited the Puget Sound Blood Center and expelled a unit of blood to be put back into myself at this moment. Donating for yourself is called an autologous donation; when you bank a baby’s cord blood in case the baby becomes sick in the future, this is an autologous donation; you can use your own healthy stem cells to fix yourself. This is ideal.
I am so dizzy and cold and migrained that I can’t focus on anything when my surgeon comes in to tell me that they’re retrieving my unit of blood from the blood bank. They are going to put it back in me. It should help. I am fevering. I am freezing. In the meantime, I ask for socks.
When I arrived at the hospital before surgery I was wearing a sweatshirt, a pair of flannel pajama plants, and a pair of plain, black trouser socks that I usually only wear with my fancy shoes when I have a job interview. The socks belonged to an ex of mine who left them at my house by mistake, and when the nurse finds them and puts them on my feet for me, I try to think about a few good memories of the girl who came with the socks to ease my fears about the fact that I am now convinced that I am actually dying. I have never had major surgery before, and I am a worrier and a hypochondriac. Where is my blood? Maria holds my hand.
(The next few times I have to go pee, they give me a bedpan, a yellow, plastic, flimsy thin that is laughably nowhere near the size of my posterior. I know it should be embarrassing but I feel nothing but relief for this nurse who is so gentle and responsive, and that is when I realize how sick I feel, when someone else helping me pee is something I am grateful for rather than upset by. At one point I pee on my socks and my nurse, who has been very kind if a little overzealous, peels them off of me and moves towards a trash can with them and I find it in me somewhere to scream at her and tell her that my peed-on trouser socks have ‘emotional meaning’ because I can’t remember the slightly less creepy phrase ’sentimental value’ and don’t even think about throwing them away, please. She puts them in a plastic baggie and gives them to Maria. A week later when I can finally go up and down stairs reliably again, I wash them.)
Eventually the unit of blood arrives and it makes me feel less panicky and eventually the blood begins to return to my face. Somewhere between three and five hours go by, and eventually my blood pressure creeps back up into almost normal territory and I feel more human than apparition. The migraine, fever, and chills that began with my bathroom trip have not abated, but I am no longer convinced that I am fading away. I have reached something resembling stabilization; the nurse informs me that I am ready to be shipped off to a private room, where I will get a door and a tv and privacy in exchange for not getting an individual nurse all to myself. Because I have had a transfusion, I need to stay overnight for observation (it also doesn’t help that I can’t yet walk, having refused to get out of my bed since the bathroom incident several hours prior)
The few times I have been in hospitals prior to this stay, it is because someone close to me was dying. I had never experienced hospital smells or tastes or noises or hospital people at great length until my grandparents died and it felt every bit as terrible as people who hate hospitals told me so. When I am wheeled into my new private room for the first time, however, I feel like I have won the lottery. Everything is bright and clean and friendly and beautiful and this private room is so much nicer than the recovery room that I want to cry with happiness. The nurse who accompanies my transport tells me that when I’m feeling up to I can order whatever I want off the room service menu. This hospital room is the best thing that has ever happened to me. Every part of it glows.
Ten minutes after I am moved through the winding hallways and elevators to my own room on a high-up floor with big, beautiful windows that overlook pretty things, a nurse comes in to tell me that there’s been a mix-up and as an anonymous donor (meaning a National Marrow Donor Program patient), I cannot stay in my room because there are other transplant patients on this floor and confidentiality blah blah blah and I start to cry.
I cry because Maria has gone to run some errands and I am afraid she won’t be able to find me in this big gargantuan scary place when she comes back if I have been moved again. I cry because they want to move me to another recovery room like the one I just left, the kind with curtains instead of rooms, where you are basically a patient in a bed in the middle of a floor of nurses, like a big cat on display at a zoo. I cry because I am in a lot of pain and the whiteness and cleanness of this room is instantly comforting and all I want in the world is to sleep in this room on the high up floor and order orange sherbet when I wake up. I cry and cry and cry and the nurse who delivered this news to me, the head nurse for this floor, sits next to me on my bed as I sob, taking in the whole scene. She says that people are often weepy after the anesthesia. Do I think I am weepy because of the anesthesia.
I am thinking a long string of expletives, and this woman is not going to leave my bedside before I figure out how get a few of them out of my mouth. Finally, in between huge, uncontrollable waves, I practically choke on “I AM CRYING BECAUSE I DON’T WANT TO MOVE ANYMORE. LET ME STAY HERE”. And then I cry and cry and cry some more, and it is damn convincing because it is not an act, even though I know in my head that this scene is probably helping my case quite a bit, and the head nurse disappears to ‘talk to the surgeon about this’, and she comes back a minute later to tell me that if I am very quiet and I do not talk to the other patients on the hall (meaning I do not tell them that I anonymously donated bone marrow to a leukemia patient), then I can stay. I cry in a happy way now.
The head nurse leaves and I turn on my private tv and rest in my private bed until Maria comes back. I am three quarters asleep when she walks in, as Michael Phelps is winning yet another gold medal on the tv.
Later in the evening I use my room service privilege to order Maria a three course dinner with soup and crackers for me. Maria has been watching tv and me for hours upon hours now, holding my cup of apple juice up for me, fluffing my pillows, phoning in reports to my mother, and generally functioning as another nurse. In my pathetic, space cadet voice I cajole her into calling another friend of ours because at 8pm I think it would be a fantastic idea to have a party in my swank, private room. I look and feel terrible, but I am arguably beginning a slow and steady climb back up.
Before we get started they need me to pee in a cup but I have diarrhea instead and I realize I am not feeling so nonchalant about this whole process anymore. It takes fifteen minutes before I squeeze eight drops of unadulterated pee out.
I am not scared until a half hour before the surgery, when I am sitting in pre-op in my little hospital nightgown that doesn’t close in the back (more like a smock than a gown, good for a first grader to paint in), with a blanket over my bare legs that are dangling off the gurney, with a gigantic periwinkle paper hairnet that goes almost over my eyes because even though I am an adult, I am not the size of an adult. This includes the size of my head, apparently.
Maria is sitting in the one folding chair they provide for your own allotted “support” person. She has a gigantic plastic shopping bag filled with all of my clothes, that I very much want to put back on. I am alternately relieved and miserable that it is Maria and not my mother sitting next to me.
When they begin to install IVs in my half dressed little body, when the anesthesiologist, OR nurse, and doctor have all come and said their piece to me, when I am alone with Maria and the woman who is looking around for one of my lazy, indifferent veins pokes my left forearm for a first try at an IV entry point, I feel the bottom drop out of me. I am so, so, scared. I am suddenly three months of feelings. I am suddenly very awake. What am I doing? I don’t want to do this. I want to jump off the gurney and run out of this hospital in my half-down and hairnet and who cares who sees my ass as I scoot out the door and who cares if the recipient of the bone marrow I am about to donate will most certainly die if I change my mind at this very last second?
I know I’m not allowed to feel any of this. I stare ahead of me and say “i’m scared” to no one in particular, as if I could say that and yet still feel as indifferent as I’ve felt about this whole process for the past couple of months. I lie well when in crisis.
They are medicating me at this point with something to “relax” me. No one will tell me what they are giving me, and I am not interested in putting up a fight with modern medicine at 6:15 in the morning. I am on their turf. No one cares if I believe in natural healing and homeopathy. They make everyone calm the fuck down before surgery, because even the coolest cucumbers, like myself, have these tender moments of panic, and it is better if they are heavily doped when it occurs to them to run away.
They tell me to lie back, that the medicine is in now, that it will burn my arm (it does) as it enters, but that soon I will feel relaxed. Maria makes no attempt at verbally easing my fears. This is a scary thing. Feeling scared means I am human. Better to just feel it until they make me pass out. She holds my hand instead. I do not cry.
The relaxation meds work fast and I am not exactly “relaxed”– more like I am barely conscious as they tell me it is time and they wheel me into the operating room. I know from prior consultations that they are going to put me to sleep before everything, and when I am safely asleep, they will intubate me and then turn me over, ass up, because that is where the doctor is going to drill into me to retrieve my bone marrow, my stem cells.
The OR is large, white, grey, sterile, full of plastic and metal and so many more people than I expected, all in different versions of the same blue scrubs. They run around like ants. Before I am even there I am gone again. My only memory of the entire procedure is my surprise that the OR is much bigger and brighter than it seems on tv.
I wake up around an hour later, with a stir and a jolt. Much like the last time I was under general anesthesia, I wake up defiant. Eager to prove how cognizant I am, I try to respond to the conversation going on around me. I hear two nurses talking above me, something about me being tiny, maybe that it was easy to move me, or they used the pediatric equipment to do a certain thing. I have not yet opened my eyes, but I am awake, damnit, and I am okay, damnit, and from my mangled body I manage an “I am NOT tiny.” before drifting back into the semi-consciousness I float in and out of all morning. I am constantly reawakening, trying hard to be present and okay, and drifting back into my hazy, medicated sleep.
My petulance is a marker that I have done fine with this whole surgery thing, that I can have my support person back now, so they usher Maria back to her folding chair in my curtained-off corner of the recovery unit. She does not recoil or gawk at my blood drained face or the machines I am hooked up to, or the awful gnarled look of exhaustion and confusion I can’t hide; she holds my hand again and says nice things that I immediately forget. In one of my brief moments of clarity I ask her to read to me and she reads from Magic For Beginners for a long time, and it is like falling asleep with the tv on.
This is the easy part. In my recovery area I have a nurse who has only one patient– me. I have a friend who holds my hand and promises not to lose my pajamas. I am only half awake from the anesthesia, I am numb from whatever pain meds they’ve pumped into me. I cannot move yet, but I feel nothing. There is a cool towel on my head. There are socks on my feet. There are pre-heated blankets, heart rate and blood pressure monitors, and someone mentions that when I am awake enough, I can order anything I want to eat. The nurse holds a cup of apple juice with a straw up to my lips that I sip from, as fluids drip into my bloodstream through the IV. I don’t need anything.
They pump me full of fluids in order to replace the liter of bone marrow they pulled from during the surgery (1100 mls, actually, but who’s counting?). Though my throat is sore and my mouth feels like it has been suctioned dry from the anesthesia and the dehydration, the IV fluids make it such that I soon have to pee worse than I’ve ever head to pee before. It is easily ten times worse than the worst time I’ve ever had to pee, in the car on a long trip, after waking up in the morning after a night of drinking, etc. I have only been out of surgery for less than an hour, but If I don’t get up and pee in the next three minutes, I am going to pee all over my recovery bed… not that I have the mental wherewithal to give a damn.
And that is where the trouble begins.
Yesterday I called the bakery and told them that I was healed enough and ready to come back to work.
They fired me.
I took too much time healing from bone marrow donation surgery, and it was during my probation period. They decided that they covered my shifts so easily that that they didn’t actually need to hire someone in the first place.
Was I doing a good job prior to surgery at work? Yup.
Did they know when they hired me that I was having surgery and would be out for a few days? Yup.
Sigh. Back to being unemployed.
This bakery is Cupcake Royale in Seattle. Their phone number is 206.782.9557. You know, just in case you need it.
I like to sit in cafes and write things down on yellow legal pads while I drink a short soy mocha (I like to see how far down the cup I can get without disturbing the latte art) and watch the people come in and order their drinks and go out again. I like to type up some of the things I write on the legal pads a week later on this blog or on my gigantic old computer. I like to think about how much better I am than everyone else for writing on legal pads instead of on a mac and then I like to ignore the fact that I want a powerbook (do they still call them that?) really, really badly and I would probably buy one if I had a five-figure salary.
…and if I lie down very still and don’t move my head too much, I feel almost like myself and I can remember that I like these things. someday soon i intend to do them again.
Some statistics to get you up to speed:
Number of days since the procedure: five. Nights spent in the hospital: one. Number of blood transfusions this week: one. Times I have cried this week: twice. Times I have had to have someone else wipe my butt this week: twice. Times I have taken percocet: lost count awhile ago. Times I have taken promethazine (anti nasuea meds that also make you so drowsy you’d sleep through the apocalypse): twice. Hours I slept on Tuesday night: seventeen. Number of naps I took on Wednesday: three. Number of times I have hung up on people because it hurt too much to talk on the phone or I was too high on painkillers to speak: at least eight. Number of sunny days I have spent indoors: four. Number of sex and the city epidsodes I have watched: twelve. Highest fever: 101.6. Number of times I peed on my socks: once. Number of times I begged my nurse not to throw my pee-soaked socks away because they had “sentimental value”: once (advice: don’t wear your ex’s socks when you go in for surgery even if you’ve never thought of them as having any value other than being nice, comfy socks that you’re glad she left behind just in case you have wild, emotional tantrums as you come down from anesthesia). Number of hospital personnel hit on: one (Tina, the receptionist with the glasses. ooh baby). Number of holes drilled in my back: four. Hours spent in surgery: not quite one. Times I was woken up in the middle of the night after surgery to have my vitals checked: four. Blood draws I had following surgery: three or four. Total amount of fluid collected from body during bone marrow harvest: one liter.
Since monday afternoon, I’ve been battling the migraine from hell that would not go away for more than a few hours each day in the mid-afternoon (for the first few days I imagined this meant I was getting better). My method for dealing with this has been to do things like eat, try to move around, get fresh air, and try not to cry (see above for success regarding that).
after a good spot of crying yesterday (i can’t do this anymore blah blah blah i hate being sick blah blah blah i need to be able to take care of myself blah blah blah), I spoke to the dude who operated on me, and he mentioned that it was rare but possible that they nicked my spine while they did the procedure and I am leaking csf; in the event of this, i would have the shittiest migraine in the world (check) and the migraine resulting from a csf leak goes away when the patient is lying down.
behold: truth. I lie down, I feel fine.
the leak is supposed to fix itself, and it’s probably not from that, it’s probably just a bad reaction to the anesthesia, or a reaction to being so dehydrated (dry mouth like you cannot imagine, like you are a raisin on the inside), or a reaction to being made so freakishly anemic in such a short span of time.
i don’t know if the migraine itself is any better, but in the past 24 hours, i’ve gotten up very little, never for more than ten minutes or so at a time, and i feel pretty good. this is the first time i’ve felt lucid for an extended period in a week.
i’m just freewriting at the moment so i’m just going to move along to the next topic. also i’m not on painkillers anymore but they’re still in my system, so bear with me.
in the moments in which I have not felt ill, in which my back has not hurt so bad, my migraine has not hurt, i have not had to pee (if you are on IV fluids, each time you have to pee, it is as if you have not peed in days and your kidneys are going to explode. you have to pee roughly every thirty minutes.), i have felt very grateful for my minutes of pain-free life. for a minute yesterday while i was supine in bed, i saw the curtains floating in the breeze, and i felt the sun setting and i watched the light move across the room, and nothing hurt, and i felt very good to be pain free and alive in the world.
everyone i talk to about this has one of two (or sometimes both) responses:
1. “my friend did that and she said it really hurt”
what i say: “yes, it hurts.”
what i am thinking: It doesn’t hurt that bad. the back pain is bad, but not better or worse then i expected. it is extremely localized, so my whole back doesn’t ache, just this one spot that’s super tight, like someone with a steel toed boot with really good aim kicked you in one spot a few a times. and i signed up for it. i knew it would hurt. if the back pain were all i were experiencing, nothing about this would be especially noteworthy. it’s the fact that i couldn’t read until this morning without wanting to throw up that’s been getting me down. …and you’re basically giving someone who is really sick a chance at something that might really improve their quality of life. who cares if it hurts? pain goes away. get over it.
2. “wow, you’re really selfless/heroic/brave”
what i say: “thanks.”
what i am thinking: no i’m not. this feels selfish. if someone offered you the chance to do something so inarguably good, something you knew was absolutely meaningful and important, something really altruistic for a change, a good deed where you didn’t have to think about whether or not it was wholly good with good intention, you would do it too. who wouldn’t do this? it feels like a huge honor that i got to do it, like i won a contest or something. i got the chance to save someone’s life; who doesn’t want that? who doesn’t hope that they’ll be the hero of someone else’s story? nothing about this feels brave or heroic. i feel greedy.
…and then the car that i was supposed to be living out of died.
true story.
this blog is not supposed to be rushed updates about my life, it’s supposed to be crappy first drafts of short stories i may or may not edit in the future (or at least slightly more polished updates about my life), but everything seems to be very up and down and wordpress.com says there are people looking at these pages, so i think it might be kind of important to share what’s been going down (and up).
my car has been resurrected since (why oh why does triple A have to fund highway expansion legislation AND be so so so wonderful when your car dies? why?), and for the next few days i have a happy, warm spot on a friend’s couch (a friend who does things like offer you her homemade ice cream and some blueberries from the farmer’s market for dinner and says things like ‘my house is your house, bitch’).
and while i had the most hilariously wonderful interview of my life yesterday with a used bookstore, i am also almost quite certain that i have a new job that will begin this evening with a bakery in seattle. no paperwork yet, but the offer was made. fingers crossed. i go in tonight for a couple of hours to ‘make sure it’s what i want’: i asked if this translated to “this is a working interview”, and was met with laughter over the phone and lots of fast no no nos and ‘the job is yours, really!’, but they still want to check out my frosting skills?
again, more bad first (and second and even sometimes third) drafts of things that happen and tales of exes to come. i swear.
