Sunday, April 13, 2014

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.