from writers' group 2/26/13

 I have decided to live. I have decided to live over and over since I was just a little thing, sick with everything and missing a total of two years of school. I have decided to live when chicken pox tried to take me down and the battle raged for months. A mysterious illness socked me in bed for three months of my fourteenth year, kept me from eating, drinking, walking, waking. I took my fluids through an IV. My big brother watched me try to lift my head and I saw his eyes well up like he was afraid I wouldn't make it to fifteen. But I did. I decided to live. I could have let go and slip comfortably into sleep forever, but what a ridiculous option. I decided to live.

 Every major illness and injury has tried to steal my breath and my blood, but I refuse to be compromised. Massive blood loss post-surgery couldn't take me down. Bacteria pneumonia turned me purple but I wouldn't be bested. All these scrimmages have just been practice for the big show. I'm a feather-weight prize fighter; I've got a flawless bout record. It's all led up to the championship match: me vs. my failing bone marrow and let me tell you there is no other outcome than my absolute victory because

I have decided to live.

things are happening.

My transplant doctor has faxed Medicaid a letter recommending I be treated in Seattle. This is a necessary step for me to have my coverage moved temporarily while I am being seen at the Hutch. This is (big picture) a good thing. Let's take a moment to celebrate a burst of activity in the process.

There's a funny scene on Parks and Recreation in the second-season episode where Ann (Rashida Jones) throws a Halloween party that starts out pathetically boring. Tom (Aziz Ansari) sees all the low-key guests glumly milling about the kitchen and tells Ann "they all look like someone just told them they have to have a bone marrow transplant!" The humor is in the truth. I'm pleased to have some momentum building because the stagnation and endless surgeries and acid burnings and laser oblations are making me feel a little unhinged. I am not pleased that this momentum is building to a crescendo of pain, hair loss, general horrible feeling, and potential fatality. I don't handle this internal conflict well, except to partially compartmentalize both feelings enough to let the happy one out in most company.

I found out all-around good news, though. Don't let my earlier ennui fool you. I had some genetic testing done to determine if my chromosomal abnormalities are hereditary or acquired and they are not hereditary. Wonderful! This means my liver and lungs should not be at a higher risk of GVH issues or tumors later. More importantly, it means T is not likely to have the genetic problem and does not have to screen for liver- and lung cancers once a year and can be my donor. I don't want anyone else's marrow but T's. It just seems right.

R and I signed our Advanced Directive documents this week, making us each other's advocates when the other is incapacitated. It's like being almost married. Like my almost cancer, but awesome. It was necessary to do because the transplant is actually coming into view, but it feels surprisingly lovely to have made that commitment to one-another.

sometimes life is difficult.

I have been living shoulder-deep in mud in for over a year. Most of the time it is cool, just a hair less than room temperature and I slog about and accomplish small, dull victories. I pat myself on the back when I get up, put on a cute outfit and walk five blocks to knit and drink coffee. I lap up my own applause when I clean a room of the apartment, write for an hour, and run an errand all in one day. There are a lot of days where the pain is pushing too far past the medication or I can't seem to wake up enough to move until almost noon so I can't get out of bed at a reasonable time, but what is there to get up for, really? The weight of being in limbo and the shattering of my illusion that limbo would last are dragging me down. 

The depression that settles in when you have become mostly homebound by illness is like a fine dust that coats every square inch of everything around you. When the only treatment could kill you and is a mirage you can swear is getting closer, it is a grease mist that settles onto the dust and makes all of life grimy. This is especially true when you are alone all day. I try to reach out and make the social time happen, but it's hard through the grime and the tired and the "breakthrough pain" and the waking up sometimes and feeling like the whole corporeal consciousness thing is a stupid waste on this sort of existence. It's hard to want it. The not wanting the social time sucks because it's about being depressed, being scared, and not wanting to have to worry if I don't feel much like talking; it has nothing to do with wanting to connect. That's all I want. I don't know how to get it through all the grime except to force myself up and out to fill my time with more than doctors' appointments and errands. But it's hard to talk about being angry and scared at the same time except to say it's like a high-pressure front and a low-pressure front settling down in disputed territory. As each system approaches, the drizzle turns to endless-seeming rain that keeps you from going out without galoshes until they overlap and I'm downstairs to get a midnight piece of jerky and suddenly hucking things around the kitchen and sitting on the floor slamming myself into the wall. That specific event only happened once but it was recent and scary so I'm going to individual counseling. 

i don't even want to talk about it.

I am desperately tired of this holding pattern. It's soaked into every part of my life, tainting everything I do. I can't draw or think or write. I don't even know why I am trying to write a blog entry, except I wanted to write every week and I haven't been. 

It's hard to tell if I'm numb or okay with my fate (whatever it may be) or in denial about the seriousness of my situation.  I don't want to talk about it anymore. I don't want to think about it. Not because it's too sad or horrifying or frightening but because I'm just so damn tired of the focal point of my whole stupid life being about how ungood I feel, healing from traumatic surgeries, and wondering when I will get the opportunity to subject myself to the horrific procedure that will either kill me, seriously harm me, or vastly improve my quality of life. My adventurous spirit is aching, a bird trapped and flapping in my ribcage. 2012 was all pain and waiting and boredom. By the end, I could see exactly what I care about the most as clear as if they were lit up on a stage and it is obvious to me now that I have spent a lot of time being afraid to commit my energy to my priorities. All I want to do now is throw myself into them and it took being miserable and scared to figure that out. Embarrassing. What's done is done, though, and now all I can think about is how uninterested I am in devoting any more time to this drawn-out uncertainty. I need something to happen before my brain shuts down entirely.

I was a 12-year-old, Tiny Tim, method actor.

 I grew up in the Alameda neighborhood, for almost ten years up on Mason in a cozy little rental just spitting distance from a mansion owned by one of the Blazers and then four more down by the elementary school. There were always a handful of holiday parties to attend: the big, family-friendly party at my dad's office, and then a couple in the neighborhood and one or two thrown by family friends. You know the type. Big, frosted, sugar cookies, pigs in a blanket, punch, hot buttered rum for the adults and hot cocoa for the kids. Adults upstairs mingling and kids in the basement with a ping-pong table or an old TV with a Nintendo or "Fern Gully" playing on VHS. I had a hard time relating to party kids I didn't already know and was one of the pesky ones wanting to listen in on grown-up conversations with a handful of olived fingertips. My hands stayed tiny and child-like and I find I still enjoy olived fingers when taking part in conversations about the working environment of corporate middle management or what to do when waste disposal claims your recycling isn't sorted properly when it very well is. I mean, really, do they want you to tie a bow around it? 


I miss neighborhood Christmas parties with their holiday party food and big punchbowls. I miss wearing a big sweater and crowding into the warm home of another family you know to catch up with people you don't see much and stave off the chilly air for the evening. I guess some friends of ours throw this annual holiday thing but I have been too sick for us to go the last two years because both events fell just weeks after I had surgery. In past years it's had a bit of that tinny irony that plagues my generation and makes some of us far too amused with themselves for wearing the ugliest holiday sweater. Maybe I am a wet blanket or a cynic, but I can't understand the appeal of celebrating irony, cheekiness, or other forms of emotional insincerity when the weather outside is so shitty and the days are so short. I think I'd rather dork it up and share warmth with my loved ones and feel a little wholesome for a minute. My youth was perplexing but Christmas was always about giving and spreading those magic feelings of well-wishes and kindness. I didn't realize it then, but I had Christmas like in children's books and family Christmas movies. I figured back then that was everyone's experience but later realized a lot of people barely touch Christmas. Friends who didn't grow up with their houses decorated inside and out like a Department 56 light-up building walk in to my moms' place now and are surprised at the amount Mom decorates and that it is only a quarter of the holiday magic she used to infuse into our domicile. The North Pole Village at Meier & Frank with the ride-on-train, Christmas tree forest and Santa himself set on a giant throne to speak about one's Christmas wishes was the only thing that beat my house. 
For a while in my adolescence and young adulthood I tried and partway succeeded in following God's word in some Christian tradition and found myself thinking more and more about being a good citizen and how that would spread His love. I was terrible at it by my own estimation but was the only message I pulled out of the Bible that made any sense. Christmas was a struggle for me. I was afraid all I had cared about during the holiday season was presents and the trappings of festive secular service and was sure I had been missing something by not including religious observance. I knew all about druidic festivals and celebrations being co-opted by Christians attempting to convert the locals and that Jesus wasn't born in December but I could have sworn I was doing it wrong anyway. I was struggling in some familial relationships and all the good I felt during those early holiday seasons echoed dully in my memory and felt frivolous. I must have read the Bible five or six times through back then trying to figure out what I was supposed to do to be doing life right and coming up with "only love God and all other people" and "if these stories aren't illustrative parables set in a time before refrigeration, antibiotics and condoms, this book makes absolutely no sense in the contemporary context." Trying to be a good Christian confused me and loaded me with so much guilt it ruined my ability to enjoy Christmas. Being emotionally adrift from my family, no matter the reason, took away the glow of tradition and made it just another sleety day in the PNW where I felt woefully inadequate.

Christianity at 100% acceptance rate eludes me and I swim about in a grey area where all the important things from studying the faith and participating in Christian communities stuck but the fantastical deity storyline just won't stick. But Christmas is back. Everything the holiday is supposed to be rings truer in my head than it ever did. My Christian years cemented the humanitarian influence of my hippie-ish parents who were involved in "Beyond War" when I was just a little bug. The effort my parents put in to making Christmas magical well past our Santa years is one of the crazy, wonderful things I love about my family. Making up goofy dances for- and singing along to Mom's cheesier holiday song selections with my brothers are some of the moments of pure, joyful memories of my childhood. Sunday service at the Bridge made Christmas my day of thanks more so than the intended holiday in autumn. I love Christmas. It is Love and thankfulness for the ability to give and receive within our community. It is gathering with others to be a fire against the cold night and making magic by suspending belief in such for the sake of the kids only to trick ourselves into feeling it, too.  It is olived fingers and a kitchen decorated to resemble a gingerbread house and Pennsylvania Dutch egg nog and Mom scolding us for eating a ton of clam dip right before dinner. It is being a blessing to others because you, yourself have been blessed.

I have to admit to an elevated sense of sentimentality this year. There is a good chance I will be having my bone marrow transplant soon and all the way up in Seattle. I have faith that the doctors there will get me through the transplant process as safely as possible and have the passion and expertise to deal with complications resourcefully as soon as they arise. Still, a little voice inside of me that sounds a lot like I do at my most coldly pragmatic says there is still a chance I might not make it and this is it for Christmas. We have been a bit scattered and unorganized the last few years but the idea made me panic and I just about begged people who probably didn't need begging to spend the weekend up at Mom's to celebrate. As much of my immediate family as is on the continent will be there this year, per my adamant request and their shared desire to celebrate together. We have the sole youngster of his generation in our family going to be in attendance and starting to build on his own young understanding of the season. No one is missing out because of work or other plans, and I may even receive my coveted international call from my dad and step-mom. We are all going to be together and it is going to be magic.

weather for sentiment

The rain here has finally started. It smells nice, the sound is soothing, and the constant dampness feels like home. It started a few days ago, after the longest Indian summer I can remember. All us who consider ourselves locals seem to share a mix of refreshment and resignation that the long streak of mostly sunny weather we have had since the end of July has finally come to a close. We are suspicious of such a long bout of truly lovely weather but it's a shame to see it go. Some, like R, are disheartened that we have entered into another inevitable rainy season. Others don't feel like they are truly in the Pacific Northwest without a bit of moss growing on the north sides of their torsos. My feelings are mixed. I grew up in this city-town on the opposite side from where I am living now and a lot of peaceful, contemplative memories from my childhood and adolescence are set against a backdrop of constant drizzle and rain falling in broken sheets across the tops of the trees. I live downtown now, in a residential enough area but most of the trees are still very young and don't offer the canopy that turns rain from a soggy-making bother to diffused-spatter symphony. Like the Inuit and their many words for snow, we have as many to describe rain here and I miss the steady downpour that turns leaves into percussive instruments.

I suppose downtown rain has its charm. It certainly cuts the ominous, muggy feeling that settles in when the seasons know they are in the Northwest and are growing impatient for the changing of the guard. There's no way they will ever get confused and think they are in San Diego just for a year. And so the heavily-treed neighborhoods feel magical in a downpour and downtown feels a bit hassled, but when enough of a deluge hits people are nervous about driving at night and the cacophony uninterrupted by car horns or motorcycles is soul-scrubbing.

Rain tonight is a reminder that it has almost been a year since my first surgery. I walked into last year's rainy season expecting to miss two weeks of work after Thanksgiving but then have my biggest medical issue under control. This time last year, I was recovering from being lightly electrocuted by the "oven" we used to make biscuits where I worked. I thought it was unamusingly ironic that I would be the one to get shocked after making no effort to conceal my discomfort with using a pottery kiln on a table under a tarp out back to make biscuits. Being so far now from that delightful chaos machine of a cafe, I have a hard time believing I willingly stuck my hand in that thing when the rain was dumping like it is tonight. That was my biggest worry: how would I tell my boss that under no certain terms would I use any appliances outdoors in inclement weather, regardless of my job duties? I knew I would recover in time for my giant laser surgery, recuperate at home for a few weeks, and then get back to being a barista/cafe monkey. I was looking forward to gloomy mid-week mornings with E when we would have two hours with no customers and thus plenty of time to do the crossword together and discuss his latest acting gigs. Then the surgery, then the blood loss, then the MDS diagnosis and blah, blah, blah.

The start of our nine months of flat, grey light and perpetual damp precedes Halloween. I loved Halloween all my life but not as much as now; it is my symbolic anniversary with R. Halloween was the night we finally gave up back-burnering our mutual crush and the following week or so (R got swine flu at the beginning of November!) led up to our first actual date. He grumbles and bemoans the rain; I remember him driving me home on Halloween and warming his rain-chilled hand in mine the whole way. It did not rain on our first proper date and we spent hours wandering a historic neighborhood after dinner, talking and laughing and trying to play it cool.

It's finally stopped but the wind has picked up again. The mask of patter is gone and all that remains behind the rasp of young trees quaking is the muffled P.A. at the postal sorting center and the squeal-hiss of air brakes on busses. The rain will return in an hour or two to help me sleep.

mystery elbow

Recovery from surgery number three seemed like it would go smoothly. Sure I had a lot of stitches in sensitive places, but at least I knew what to expect and had been feeling close to great for most of the summer. Bullshit comes in sets. I should know this by now. Just as I am getting sick of my head swimming from painkillers and my guts aching from the stuff you have to take to keep the painkillers from making life rough later (please accept my guarded lavatory euphemism), the elbow on my dominant arm spontaneously develops some sort of cellulitis/arthritis combo. I went to the ER with an elbow that had received no trauma but was huge, red, and nearly immobile. I am between PCPs right now (working it out with insurance), and my immunocompromised body doesn't have time to wait on paperwork when a possible infection is involved.

I waited in the ER for four or five hours before I was seen. It isn't particularly unusual to wait a long while, especially if trauma patients come through. but this felt excessive. Two men situated at a diagonal over the shoulders of R and I loudly complained to one another about the wait repeatedly and tried to make small talk with any women seated alone. A three-year-old who had clearly hit his little wall was shout-babbling and squealing in toddler Spanish at his parents while shoving his hands in every box of tissue strewn about the waiting room. Exhausted and trying to milk the last bit of cold from a tepid ice pack it took an hour to track down, I was led to a bed in the hall by the Life Flight elevator. I was seen by some surprisingly upbeat nurses and doctors who eventually determined I had cellulitis, possibly MRSA because that's what it always seems to be when I have cellulitis. While I waited for my discharge paperwork, a young woman who looked close to my age but was probably 8 years younger was escorted on a gurney directly across from me by several officer's from the sheriff's department. A doctor was getting frustrated trying to find out from one of the officers what she had taken because the officer wasn't looking at whatever sheet he had that apparently had a list of her choice of poisons. Heroin, possibly meth. I didn't know people combined the two. It seems contradictory like smoking a lot of pot and drinking a cup of coffee, but what do I know? I just watched this filthy, writhing creature restrained by the ankles to her bed and moaning. I was managing a lot of ongoing pain sites but this poor girl was truly miserable. I was glad to go home. 

Doxycycline must be taken on a full stomach or unfortunate hijinks in your digestive system will result. An apple and a beautiful fig galette is not a full meal unless you are four. My deepest regrets to the people on the grain mill outlet's restaurant patio trying to enjoy their lunch. I tried very hard to make it out of sight and past the trees, but when that failed I am pleased at least I made it to the storm drain and didn't dally. I always carry my big, orange water bottle so I hope it made it less terrible to witness when I rinsed the drain off so you wouldn't see the evidence on your way home. I heard one of you point me out. I hope you didn't notice me sitting behind a tree trying to call my fiancé who was still in the store. Or maybe I hope you did see me and you saw how mortified I was and you forgave me in your mind for upsetting your Saturday lunch with the kids.

It only took two days for the redness to disappear, leaving just a bit of dark, puffy elbow behind. Still, stiffness and soreness prevailed. My discharge paperwork included instructions to return to the ER for a follow-up visit so I made a plan. I refilled my prescription at the bottom of the hill, took the tram to the main hospital with snacks and tea all set and checked myself in a little before 2pm. I was triaged right away and there were only two other people waiting so I hoped I would be ready to go by 5:30. The waiting room began to fill up once again with people loudly complaining about waiting, vilifying trauma patients, and giving up on trying to control their children. R arrived right after work and almost immediately a grubby man in a wheelchair started shouting across our laps at a pretty, blonde woman sitting alone. I silently begged her to stop encouraging his awkward, booming, flirtatious chit-chat but alas she was as nice as she was attractive and my patience started to fray when the man's chatter became nonsensical after about seven minutes and continued on for what felt like another twenty. I watched "The Pacifier" starring Vin Diesel four times through, including the additional insult of sitting through ten minutes of doofy DVD menu music each time before the film restarted itself. I had the sense to claim my waiting room territory near one of the only power outlets and my perfectly charged smart phone provided blessed access to the hospital's wifi and thus my Netflix account. With my elbow throbbing from a lack of any good resting position and my stitched bits screaming for heavy drugs or a hot bath, I turned to "Freaks and Geeks" to sooth my rapidly-building distress. I was brought to a triage room where I would be quickly seen by a doctor and sent on my way after waiting over seven hours.

The doctor who examined me was worried infection had snuck its way into my joint. A sweet nurse who went on and on about both our names being Gaelic names meaning "strong" blew my vein trying to take a sample for my CBC. I had been wary of the wrist IV because I didn't care for it at my most recent surgery. My wrist ached for days and is still a bit bruised. I should have asserted myself but I didn't and got a puffed-out wrist full of blood and a wad of gauze wrapped tightly around it. I asked for ice to dull the sensation that I'd slammed my wrist in a sliding glass door. Nurse B had told me they call it the "intern vein" because it's so easy to hit and still she popped that needle out the other side and sent me careening past my wall. I didn't even hit it, I just took my ice pack and sat feeling roughed up while I waited for the orthopedist. 

Gentle guy, that orthopedist, and not too keen on dealing with patients who have hit their limit of taxing  stimuli and are in an unmanaged and exhausting amount of pain. Or, I irritated him by trying to plead my way out of a fluid tap and having a bit of a panic spell when I was told it was the only way to be sure bacteria weren't eating their way through my cartilage. There were other patients who needed attention and here I was sort of losing my cool trying to fight the urge to flee over a needle poking me in the elbow. Finally, despite the supremely unhelpful suggestion from the orthopedic nurse that I calm down and breathe through my nose, I channeled my 20-year-old self who watched as her wrist was stitched up following a freak dishwashing accident. I steeled myself, stared at the denim-covered knees I had tucked up to my chest and tried to find my zen spot. I was allowed to examine the needle before it went in because I am not comfortable flying blind, and the initial insertion was nearly painless. Then there was some manipulation of the needle in my elbow that stung and made me feel nauseous, followed by wrenching and suctioning that sent sickening waves of pain down my arm and into the palm of my hand. I yelled a bit and cursed a bit and it was finally over. Both my arms were immobilized with pain and I lay sprawled on the bed drenched in cold panic sweat. Adrenaline lit up all my cells and made my muscles twitch and I babbled for a minute to R about never wanting a fucking needle in my elbow again. 

I was admitted overnight. If my elbow was being consumed by infection I would need to have it surgically examined and flushed clean. The orthopedic team wanted to begin surgery as soon as the results came back. R settled in to the reclining chair in my observation room and I watched "Skins" and set off the IV regulation machine every ten minutes trying to scratch my nose. The last wisps of adrenaline and anxiety were replaced by complete fatigue by about 2am and I slept fitfully until the orthopedic team arrived at seven o'clock to announce the meager amount of fluid they were able to tap and test showed no signs of bacteria and I was free to go. R took the day off work and we went home to rest.

I slept for two days. My library books are overdue, I have missed a number of calls I still haven't returned, and I went into painkiller withdrawal because sleeping through taking them is an inadequate step-down plan when you have been taking my small dosage for a number of weeks or months. I feel sort of better now: I'm at an energy level that is my minimum for functioning outside my bed, but my elbow is as sore and 90% as stiff. I'll be going to occupational therapy next week for some excercises to keep it from freezing up forever.

All this and still no one really knows what happened to my elbow.