left it all at the top

My body is on a weird sleep schedule lately. The Ambien they put me on in Seattle has been perfect for the last six months or so when I wanted eight solid hours of sleep. The last few days have found me awake at 4:30 in the morning to use the bathroom, though. Then, of course, I am wide awake despite attempts to bury my face in my pillows and get my body in exactly the position it was in when I was asleep. If I know anything about me, I know this is a good time to write in this-here blog and free up some brain space.

New birthday is July 19th, so I have my long-term follow-up visit at SCCA scheduled for the week before then. I am actually excited to go to Seattle. July is a nice time to be there, and tests to see where I am on the righteous path of bodily healing are the same as the tests to determine my fitness for a bone marrow transplant, but the psychology is different. Everything about this year is different. I'm taking steps and leaps in the direction of my optimum health instead of bracing against the onslaught of surgery after surgery and the inevitable transplant. That is all behind me and I keep shedding the hang-ups of that experience like layers of clothes on a sprint to skinny-dip.

Angel's Rest was a good place for me to leave a lot of that behind. A few dear friends and I hiked the 5-mile up-and-back in the Columbia Gorge last Saturday. The hike is 2.5 miles up with a 1,500' elevation increase along the side of the Gorge that switchbacks through deep green forest and along exposed boulder falls. Every turn of direction opens a view of the Columbia River or Cooper Falls, and this time of year sprinkles much of the lower part of the trail with trillium blooms in white, pink, and purple. I have done this hike quite a few times, and I usually ascend without stopping until the half-way point amid one of the rock falls. We must have stopped three or four times on the way to the summit, which was mildly frustrating for me as a reminder that I am not yet where I want to be in my physical fitness; my friends are gracious and kind and helped me see that being up there was a major accomplishment in of itself. All the way up, I pushed myself to climb a little further than my comfort zone. It's always been my way, at least as an adult. I was a timid kid but as an adult I have found the only way to get what I want is to shrug past that initial discomfort to see what the limit really is. The more life I have, the less interested I am in coddling the little voice inside me that wants me to stay within the confines of what is easy and comfortable.

The last few years of surgeries and my transplant have forged that in me deeper: taking on more pain than I wanted so I could be stronger than a potential painkiller addiction; letting go of long-held, unhealthy, imbalanced relationships so I could increase my exposure to my own good nature and appreciation of the caring, brilliant people in my life; walking miles' worth of laps around the BMT ward to keep my muscles from atrophying; taking ballet to rebuild the muscles prednisone wasted by 25 percent; wading back into my hobbies a little at a time, even when my cognitive skills were impaired, because I was depressed without them. The pushing past where I was to get to where I am trying to go has led to a lot of growth, but it's also saddled me with some empty- and half-full baggage to drag around with me. It made the climb up harder, but I left a lot of it at the summit. I left the "Cancer Patient" identity on the bench at the top of Angel's Rest because despite my bi-weekly oncology check-ups, I'm not much of a patient anymore. Sure, I am on a few medications, but I am not the sickly thing I was before my marrow went into remission and my new immune system started destroying the HPV. I left "needing a caregiver" on the bench because I have taken every step to being an autonomous adult again and have the strength and faculties to take care of my own life again. I found an apartment and a roommate, I take Amtrak and Trimet with only a little bit of germ-related hyper-vigilance. I can cook again, read without getting tired after three pages, take crazy long walks for no reason again, knit complicated patterns, maintain a conversation. The last bit is actually still a little hard but not because my brain is healing from being poisoned; I haven't had much in the way of conversation for a while, and less in experiencing life outside my bedroom or a hospital or cancer clinic. It's a practice thing. I also have a hard time talking to attractive people, which is new for me and something I left most of on that bench. I have felt "undatable" for a while, even though that worry has been fairly irrelevant most of this time. I went through a needlessly dramatic break-up, gained a little belly pooch from the prednisone and all the sitting, part of my vulva was removed, and I've been largely mystified at how I am going to get back to being a contributing citizen of my community. The drama of the break-up is over, I exercise five days a week, I'm going back to school, and I know how to make the new landscape of my bikini area work for me. I left "undatable" on the bench. I won't take the leap from "datable" to "dating" until I am settled back in Portland completely ...and even then being able to feel things about people in that way is a new development in healing and will have to be reciprocal and not some surprising crush feelings that turn me into a big idiot dummy when I try to converse with the object of my interest. Nonetheless, I felt my mojo coming back on my way back down Angel's Rest.

The hike down was light and springy. My friends and I chatted happily and I felt all these hang-ups that have been waiting to molt flutter off my back. This time last year, I was in Seattle for my initial testing. I spent a week there before they decided I needed a right-side radical vulvectomy and sentinel node biopsy before I could have my transplant, in case vulvar cancer had metastasized. This time last year, I was a ball of anxiety over the unknown and the imminent, clouded by pain medicines and constantly worried about the balance between my health and my partner's declining ability to deal with everything happening. It was not a good place. Now I am getting back to my old life, a new life, a life with strength and hope and excitement about what is ahead. I am proud of how far I have come in this little bit of time, and thankful for everyone and everything that have contributed to my being here and being unstoppable.


This, like so many other blog posts I put up, is mostly a stream-of-late-night consciousness, so I am not going to bother editing it. I think one day I will actually go over all this brain dump and feels-baring and edit it with my personal journals (on paper!) and make a book out of this experience. I don't feel a distinct theme or thread when I look at it all now, save for my constant need to find homes for the ideas and thought fragments and images that crowd my brain. We'll see. I'd really like to make this into something real and whole.

writing frustration vomit

My writing hang-ups:

I am not very funny. I am not great at pop culture references, outside of certain punk- or alternative acts, from the 80's and 90's; the questionable content of similarly-aged children's programming; mid-to-late-90's internet culture; 75% of the works of Miyazaki, plus nerd times like FLCL and Cowboy Bebop; weirdo movies like "The Young Poisoner's Handbook." I am protective of people in my life, which conflicts with my strongest asset: my willingness to be candid. My candidness is confined to my little lens. I don't know enough about one thing to write on a theme with any sort of regularity. I could, I suppose, with a task ahead of me. The task ahead of me lately is to write down all the feels and the events and keep it minimally gross and reduce dramatic nonsense in writing to the bare bones because though raw wounds and old scars attract a certain type, this blog is not as anonymous as I pretend it is. I save Tumblr for that. I can write personal accounts and objective accounts, but creative stories and shorts balk me. A blog like mine feels like the natural evolution of the study of poetry and prose that filled stacks of notebooks in my younger years. 

When I write in this blog, my audience is me. I have a vague idea of who reads this blog, and it's a decent number of family members and friends, some of whom are better off not knowing everything buzzing around in my head, so as soon as the shrubbery gets pushed away from the candid shares, there is a semi-ineffectual guard there in the shape of my internal editor who chooses suits from Men's Warehouse and has a bachelor's in creative writing. He is not helpful; he is an obstacle. I wish my editor was more like me when the floodgates open and raw shit just goos out all over and I have to shape it into something intelligible. I like that there are a reasonable handful of people who read this when I update, but though my heart says I get the most hits when I let all the real happen without bumpers, my head wants to keep the close people I have within arm's reach from moving to just past that.

This is all a lot of bullshit, to be hung up when I write. I hate the tepid results I get when I try to swing a pen behind a shield. I do better with blood on the table, adventure in my veins, a drop of poison on my tongue. I am not going to abandon this blog. I can't. But I need a venue to write boldly and I need permission from myself to do that harder, better, and more creatively than usual. I want to feel like my voice comes through distinct and unusual. I hate feeling like I'm not growing, just finding ten different, similar ways to talk about the same old crap. I don't want to be just another whisper in a bedroom that gets eaten by the internet and abandoned. My blog was started as a way to keep up my end of a multi-person conversation about how I was faring, but my mental acuity comes back stronger every day and I miss writing like fighting, like love affairs and hitching a ride with strangers. With the mental acuity comes a lot of emotion of all sorts, and I am getting twinges that I thought were gone. Little fires I want to feed on paper in case they burn out in the world. 

But I don't know what the hell to write about.

Seems like the people near me who write do so in the form of comedy or music reviews. Like I said, I am not funny and I am not so great with volumes of pop culture, so it's hard to get a read on what wisdom I could glean. My old life was a much more prolific writer. New life is stockpiling ideas and nervous notions but not really moving down any stream yet. I have forgotten how to write a rich story or a play. Maybe I need to go back to 15 and fill notebooks full of poetry.

Meanwhile, I will listen to Ida Maria and writhe and strut and get reacquainted to the feeling of my soul being inside my body. I need to be patient while the linguistic part of my brain catches up with the emotional, creative parts.

Spooky Self Portait