Emerald City of marrow, day one complete.

Here I am in Seattle, nestled into temporary patient housing while I wait for a spot in the long-term building. It is the difference between a nice, sterile hotel room and a nice, sterile one-bedroom apartment. I'm looking forward to having a proper kitchen en suite; cooking (so long as I have energy and am not nauseated) is stress-reducing for me. Still, this certainly beats the Ramada down the street given the DVD library, high level of hygiene, and the overall comfort.

Today was a challenge. We came up from Mom's place in Castle Rock in the morning and got started immediately upon arrival. Blood draws, exams, interviews, waiting rooms, and working out my still-unsorted housing/Medicaid situation. My painkillers had a hard time keeping up and by about 5:30 it was clear I was well past my threshold for activity. The emotional roller coaster I have been riding for the last eighteen months ramped up today, pitching me into waves of fear, excitement, relief, frustration, and anxiety. It's almost ten o'clock and I should be trying to sleep, but I have been in bed for hours just enjoying the evening with my brother-doner (as the hospital folks call T) and my lovely fiancé in front of the TV. It has been the most normal, relaxing thing I could ask for right now.

I have so much to say right now, but lack the energy needed to do so. I have a break from the madness this weekend, including a stretch on my own while Mom returns R and T to the Portland area and gets her long-term stay bag together. I will use some of that time to park myself in a cafe somewhere to write and knit and get a cappuccino in me. Expect a good few updates to come out of that time.

Until then, I have to humble myself a bit and post a link to my Paypal account, just in case anyone wants to help my family and I stay afloat. Living temporarily in Seattle is going to be an expensive endeavor, even if I can get assistance for most of my housing costs. Administrative fees, parking, gas, food, incidentals, and yet unaccounted-for expenses are already starting to accumulate and are going to stretch us very, very thin. I certainly don't expect anyone to donate to the cause, but I have had a few people ask if they could and I think the best way for me to accept that help is to just slap a "donate" button on a few blog posts. In the event there are leftover funds once all bills and fees are settled, they will go toward our modest wedding next year and/or updating the barely-working video game system for the pediatric patients/children of patients in the transplant clinic waiting room.

If you'd like to help but don't feel financial assistance is appropriate for you (which my family and I totally understand, not being particularly flush ourselves), my spirits will be certainly lifted by postcards, letters, and the like. I don't have an address here yet, but you can send them to my apartment in Portland or give them to R to bring to me. Please message either of us via email, text, or Facebook for that address.

Time to sleep. I love you all.

tuck and roll

My arrival date in Seattle is April 3rd. I have known about it for about a week now, but like a lot of other important bits of information and transitional milestones in my life it has taken me a little while to process the reality of the situation. I am hardly a knee-jerk reactor. There was a time when I worried if I had any feelings at all, but I have since realized I am a low simmer and not a rolling boil. Unless, of course, substantial heat is applied and then everything in my path gets a good scald. Someone in my past accused me once of not facing things, not dealing with my problems head-on because I don't like to talk about my life issues immediately as they are happening. I guess some people just don't value a good mull. I like to examine a situation from all angles before I decide how I really feel about it. That might take a few minutes or a few weeks. My mom came out to the family when I was 12 and I held a neutral opinion of her lesbian leanings until I was a sophomore in high school. (The opinion I landed on was that I had very little interest in whether my mother was attracted to men or women, but held a strong interest in whether or not the people she dated or was partnered with were kind, honest, and treated all of us with respect.) So you see, it has taken me a week to ponder the reality of my bone marrow transplant enough to really talk about it.

I am certainly frightened. There is nothing appealing about the process of having my marrow stripped from my bones and waiting out the battle between the new marrow and my body while the marrow figures out it is in a new home that needs its attention. The mortality component doesn't help, nor does the temporary increased risk of vulvar cancer. Without the transplant, vulvar cancer and leukemia are both eventual inevitabilities so the choice is to tuck-and-roll or stay in the car while it crashes at 70mph into a concrete wall. I have always been good at the tuck-and-roll. When I was 17, I jumped on the back of a friend's slow-moving station wagon and had to leap off and roll when she started to speed up. My awesome tuck kept my ice cream cone perfectly intact. The same happened at 23 when my skateboard hit a crack in the street and bucked me forward, and despite a sloppy, ass-over-tea kettle roll I hopped to my feet at the end with nary a scratch and my lit cigarette still in fine shape. I know a little bit about not completely eating shit. This skill or instinct will surely help me get through four months of awful.

The coordinator called yesterday to give me an overview of what to expect. I will have about two weeks or so of exams, meetings, and preparatory appointments before they even start the conditioning process. I will have to see a dentist, take classes with my caregivers, meet with a nutritionist, have a pelvic exam, and have a central line installed. Tubes going into my heart and sticking out my chest may currently outrank death in things that give me the willies. This is subject to change, but today it is grossing me out. After all that business is squared away, I will have my week of conditioning where I will be poisoned and irradiated to eliminate my bone marrow. T will have had two weeks off at this time, but will come back towards the end to have his stem cells tapped. Then the transfusion, and then 2-4 weeks in the hospital. It turns out that I won't be in full-on isolation unless there is some sort of complication. Once I can walk around and eat and drink on my own I will be released to patient housing where I will stay for the duration of my remaining 3 months of observation and treatment. If things pretty much move along this schedule I could be home by August, my favorite month in Portland. I could even be home in time to adjust to being out of the hospital setting, get some strength in my muscles, and attend the wedding of one of my most favorite people and his sweetheart.

That reminds me... I want to make a blog post about love and community and I am making a note here so I don't forget.

The ball is rolling fast now, and I am excited to get this whole miserable process underway. I'm terrified and grumpy about what it entails, but if I can be getting ready to surf and camp all summer by this time next year then I'm glad to get it over with. They say it will take a year before I really start to feel Better, but I'm awesome so I will try to make it happen in nine or ten months. I want to start my surf conditioning by March. If I can make requests of people, two of them are: please send me letters and postcards; and please tag me in all your fun, awe-inspiring, exciting, and/or peaceful photos from your outdoor adventures this year on Facebook so when I log on I can go right to them and pretend I am there. Thank you.





When I get scared, I think about this song (somebody's dog footage is just a bonus):

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.