Musings

 Not too long ago I came back to post here on my FieryIrie LiveJournal. I read my old posts. From last year. While I was dealing with a cancer scare. And it's sad stuff. It's painful stuff. That I wish to remember, yes, but put behind me. 

 So I'm going to shut down this LiveJournal. Or... I'm going to stop using it all together. Not erase it. Not forget it. But I'm not going to contiue to work off of it. It's time to move on. I have to burn that past so I can rise out of its ashes. So peace out, LJ. I'll be on some other blog site, not yet determined. I'll link it when I figure that much out.

      Sincerely
          Aden~!rie

 First off I'll say plainly the point of this post. I am looking for a corner crash out in in Seattle for the rest of May, some of June and unlikely, but possibly some of July. A small room, a corner of a house that can be made private enough, something along those lines. Anything but where I am. I may be able to pay a little rent, but since I have no income, I'd most prefer to trade house skills. I clean, I cook, I garden, I paint, I do labour. I have to get out of where I am. I'm in lock down heavy study mode to take my massage exam at the end of the month and don't want to be in a dirty house or a party house... I may be on a short road trip at the beginning of June and I have my surgery some time in June or July and will be healing up at my mom's house. So my presence wouldn't likely be constant... The rest follows...

 I've encountered a bit of delimma. I have no where to happily stay. This is not to say I have no where to stay. Simply that each place where I am welcome at the moment has major downsides. Other people with depressive downsides, that is... Both are my respective parents houses.

  In Monroe I have my own room. It is quiet and beautiful. But there are some very serious interpersonal barriers that have become a very big deal and it has become apparent that I am not welcome. It's causing some serious issues in my mom's life and being the kind of floater I am, I see no need to place myself in that position, be that catalyst, or deal with the kind of very aggressive passive aggressive behavior that is being passively sent my way.

 In Kenmore the house is full of people and animals. The food in the pantry is not healthy, the house isn't often cleaned. There are other depressive personalities there that I don't get along with and this makes me constantly grumpy and unhappy. I find myself snapping unneccesarily and resentful of cleaning up for everyone else all the time. The room I have there is also a storage room that I don't get to have much effect on.

 So that's that. I would love it if a friend had a place to stay where maybe I could help out a bit for a while in return for a place to crash out. But if you know of any small room sublets or good people looking for that kind of trade please let me know!

    <3
   Aden

   Today it's been three weeks since the end of my nose was replaced with the skin from behind my right ear. My right ear now lays closer to my head.

 I've taken reaally good care of it and it's healed/healing nicely. I'm pretty sure I pulled the last stitch out last night. I can see now that while it still looks like something is not quite right with my nose, that it should look good when the final surgery is done in a month and a half, hopefully less. 

 Tonight when I cleaned the oinment off that I clean and replace multiple times every day to facilitate the healing process I leaned in to the mirror. I looked at the scarred upper edge of the graft. I looked at the funky middle part of the graft.

 When I leaned in close to the mirror, I peered at the surface of the graft where it's fleshy and looking particularly healed. To my surpise I spied a brand new layer of super fine, super light hair. This is both unexpected, and fabulous! Much sooner than I would have thought I'd see this kind of thing. When I feel the skin behind my ear I can feel that the kind of hair that occupies this space is the same fine hair. I expect it will stay this way.

 I went to a cancer symposium on melanoma with my mom yesterday. I might tell you about it later. I don't feel like it right now. But I'll say: intense, eye opening and good. 

 I felt good today. I felt really good today. The sun was shining through puffy white clouds that floated slowly in and out of view. My nose is healing along nicely. I've been out of pain killers for two or is it three days now? Which is fine because I don't need them anymore. I was blessed with not going through withdraws this time. I've been on antibiotics for 3 days now. Minimal side effects ravaging my body. My throat no longer painfully swollen.

I took a long and lazy walk. I listened to the whole Iron and Wine album 'The Shepherd's Dog' sitting on a mossy and weathered concrete block on a dilapidated road that's been reclaimed by nature behind my mothers house. And I stared at the sky a lot. My neck always cranes backwards and I stare in awe at the great blue vastness above me, around me.

 I walked through the graveyard down the street from my moms house. It draws me towards it every time I walk. With huge pine trees near a hundred years old, and gravestones twice as old. When the evening light casts long, thick shadows across the neatly kept lawn I feel amazingly at peace there. The newest dug grave lies next to a headstone reading 'BOUND.'

 I dream of my future. While that is a good thing, with a new feeling of purpose I also find it overwhelming. I want it all and I want it all now. I want music and I want medicine. I want farms and I want friends. I want bikes and I want tours. I want love and life, all in one big never ending whirlwind.

 Okay, alright, patience. Meditating on patience and taking it all a day at a time...

Today was hard day. Shit right now it’s all hard. I’m realizing I’m going to need some serious help from the outside to keep things moving in a healthy way. It’s very hard right now to keep myself in a positive mood. It’s hard to know where to go for help. I’m really not good at asking for this kind of help. I’m not good at displaying my own emotional weaknesses. I don’t like offloading on to others. I don’t like crying in front of people.

 Depression is a bitch. Depression is a voice inside you. It tells you to worry. To hate yourself. That voice tells you others don’t like you and that’s why they haven’t called. It tells you people are mad at you. It tells you you aren’t healing. It tells you you’re ugly. Even when you know none of these things are true it’s hard to ignore that voice telling you so. Surgery, isolation, pain killers. Fabulous footholds for this thing, depression.

When I woke up this morning my throat, specifically the uvula (hangy ball in the back of your mouth) was so swollen that it was incredibly painful to swallow. The first few minutes of the day were minutes of pain comparable to when I woke up with mononucleosis when I was 18 and cried the entire way to the emergency room, it was bad. But I could tell I’m not sick. I could tell it’s local. Looking at my throat in the mirror was worrying. So I called my mom. I called UW Medicine. I was having no luck with getting through to someone. I ate some pain killers. I ate some ibuprofen. The swelling reduced as I moved around, but it was a frustrating process, getting through to speak to someone about this thing going on in my throat. I could feel it was some sort of infection. When I finally got through to the resident on call she brushed me off, telling me it couldn’t be connected.

Lets see. I haven’t been sick in 8 months. Last week you cut off the tip if my nose, which is still an open wound. Now I have some sort of infection 3 inches from that site. NOT CONNECTED!? Later a nurse on call gets a hold of me and little surprise, they want me to get in to see a doctor today. Being that it’s 6pm, urgent care.

Today as I waited, in between the nurse resident run around I colored and listened to music. There’s a lot of thinking time involved with this activity. So that mean thing, depression worked its magic. I choked back a lot of tears. For me, I cried a lot of them too. Little bouts of crumbled words with a few tears I couldn’t hold back. I thought about my nose and its healing process. I worried about the graft taking. I worried about my friendships. A lot of what I’m feeling is a great sense of disorientation that I’m unable to put words to. Well, I can put individual words to it, but stringing sentences together is less likely. Relationships, future plans, a sense of hopelessness, a confused sense of time, a general feeling of low ambition, low hope.

 Thank goodness for my voice of reason still existing. There is a guy. He is a friend. Sometimes he is more. He has been a very good friend to me since this whole cancer thing began. He has been attentive and consistent and caring. We have a history and it has not always been clear. So in my depression things became foggy again. Foggy and frustrated. And my depressed mind started to get very angry with him because I haven’t heard from him in what feels like a long time. All day I’ve been thinking about the mean letter I want to write him, finally bringing to the surface all the things we’ve left unsaid for so long that should not be left so unclear in a sometimes-friends-sometimes-more relationship. About an hour ago I sat down and looked through our most recent sets of messages and find myself grateful for that voice of reason in me. Because I probably would have shocked and confused him with a letter from my inner depression voice. There are things that need to be said. But depression voice blew them to larger than life proportions.

 In the end the doctor I saw today was wonderful. She listened to everything with an attentive ear. She looked at my throat and indeed, agreed I have an infection going on. She prescribed me some antibiotics and sent me and mom on our way. So add another thing to the list. On top of the infection now I have to watch out for diarrhea, a yeast infection. I get to kill all the good bacteria in my body along with the bad. But she said it looked like the graft was taking well and the infection in my throat isn’t too much to worry about.

  I can tell this next couple months are going to be hard, with a strong desire to hide while I feel unpresentable I really need to be seeing people. I need to do what I can to be active and productive while I can’t work. And I need to do what I can to beat that depression voice back, because I’m on the road back to health. Even when it doesn’t feel like it. I am.

(Written Saturday April 25th, posted Monday April 27th)

On Monday, 6 very blurry days ago I had the most extreme experience, an experience that I hope to keep as a rare experience in my life. I had surgery. On my face.  To removed a good chunk of my nose, and hopefully all that cancer that resides within it.

We went in very early. They asked me lots of questions. I took off all my clothes and put on a little open backed garment. They asked me more questions and checked my vital signs. The woman said my heart rate was surprisingly slow, that this was good. I breathed calmly. Slowly. Grounding, grounding.  After lots of waiting and more questions they took me into a little room to map my lymph nodes, because the plan was, during the surgery they were to cut some of them from my neck to see if the cancer had spread outward and into them. In the hustle and bustle of the hospital, nurse after nurse asking the same questions, consulting different papers, they’d forgotten to numb my nose. So when the time came to injected my nose with radioactive dye there was no time to wait for a numbing topical crème to take action. They couldn’t inject my nose with lidocane as it would have an effect on the other injections they were about to do, so they did it on my bare, full of feeling nose.  It proved to be the single most painful thing I’ve experienced throughout this entire mess.

 When I came back they tried to put a needle in my vein. Left hand, no luck, right hand no luck, left arm, tattoo over the veins, right arm, bingo! And started to give me drugs. The first one they gave me made the room go fuzzy gave me amnesia (notable in retrospect) and made me laugh hysterically despite my mood, which made me feel self conscious. Especially since the doc that gave it to me was Dr. Dreamy.

Shortly thereafter I said goodbye to my mom and they wheeled me into an operating room much smaller than I expected. It was white and filled with people who swarmed me immediately attaching doodads and hobnobs to various electrodes attached to my head and torso that I don’t remember having been put on me (see amnesia inducing medicine from last paragraph). They had done a good job with informed consent all morning, so this rush of people wasn’t a shock. Dr. Dreamy gave me the second half of my laughing drug…

And I blinked myself groggy into another room. I couldn’t talk, I wasn’t sure if they had operated on me yet. It was dark and I was confused. A woman was asking me questions… How did I feel, am I nauseous, do I need to use the restroom, do I want my mom to come in yet? At some point I figured out my surgery was a done deal. The woman told me I’d slept a long time.

 If you’ve never been put under general anesthesia you’ll be surprised to find that no matter how long you were under for you have no sense of having any time passed. 4 hours had passed in the time that I blinked and woke up confused in the recovery room. It’s very disorienting, but luckily, I was too groggy for questions. The woman gave me some liquid pain killers and led me to the bathroom. Walking made me so nauseous… My moms came in, the nurse gave me ginger ale and saltines and that was it, they wheeled me to the car, and we drove home.

 The next day, the next 4 days… a blur. I felt generally okay the next day, we went for a walk. I stayed mellow and ate pain killers.

The day after, my birthday, not so easy. The general anesthesia does mean things to your body. It makes it stop working. And when immediately after your ‘functioning’ on large amounts of pain killers… Forget about eating. Forget about taking a shit.  So on the third day I became painfully aware of my inability to do either of these things. My mood took a serious dip. Everything came into better focus. And it all looked ugly, swollen, unfocused. I’m bandaged, I’m blurry, it’s my ¼ century birthday… *sigh*

5 days later, yesterday, Friday, is another big day. The bandages come off. So we woke up early once again and drove into the UW Medicine. My doctor is about to leave town for 3 weeks and the office is heavily booked. So we wait a long time, and as the time drags on an underlying anxiousness builds in me. I don’t know what I’m going to look like under these bandages. And I don’t know if I’m going to find out if I have more cancer. If I have to undergo  treatments, if I have to have more surgeries on my nose.  Nausea is washing over me in waves that take me far from shore and I have nothing to grab on to. A nurse comes in and sees where I am. She promises to bring Dr. Neligan in right away.

Within a few minutes Dr. Neligan and his beautiful resident are in the room. We chat briefly and they set up to cut the stitches and pull the bandages from my nose. It’s all very unceremonious. Snip, snip, pull. The bandages are off. My mom is filming. Dr Neligan and his resident are standing over me, peering and discussing. They say it looks good. Better than they expected. No one offers or hands me a mirror and I don’t want one.  My mom asks if we know anything about the results of my lymph node biopsies and he  turns to the computer to look. Up comes my file and without much inflection Dr. Neligan reads… ‘negative, negative, negative… all negative’.

We’re not sure what he’s just said… I ask ‘does that mean…’ I don’t want to jump to conclusions ‘we’re all good?’ ‘Yes’ He says, nonchalant. I don’t react. I feel so stern and solemn. This is the hardest shit I’ve ever gone though. I don’t even feel jubilant in my heart. I just feel solemn.

We discuss a bit more before we go. It will be several months until I come back to reconstruct my nose. They tell me how to take care of it. Warm water and soap, keep it moist, no rubbing.

When Dr. Neligan and his resident leave the room I look at my mom, she’s still filming. The emotions are flowing up towards the surface and I’m being swept out of reach of anything to hold onto again. I wave at her to turn off the camera. Please turn it off! I’m screaming in my head. I fucking hate crying in front of people. Camera off, she takes the two steps to my side and hugs me while we both cry hard into each other’s sides.

I haven’t cried much through this whole thing. Mostly just in moments of high stress. Mostly when dealing with other peoples inabilities remain calm. But in this short moment I lost all control… before I quickly, once again regain composure. ‘Let’s go.’

My mom asks ‘Do you want to see it?’ ‘No.’  But there’s a mirror on the back of the door. I can’t not. I walk up to the door and tilt my head back. The lower half of my nose is missing. It looks nearly skeletal. It’s like someone’s just taken the bottom half of my nose and with a dull knife dug it off. It’s surreal. It looks so much worse than it feels…

 We began doing small photo shoots the day before my surgery, so back at home we pull out the camera again. My heart is sitting on a chilly concrete floor and in these photos it looks it. My eyes are dead and sad. There isn’t a hint of a smile behind them. I’m looking forward to the set where there is smile in my eyes again, because for now my heart is pretty cold and achy.

 3 weeks ago I was diagnosed with skin cancer. If I had been able to stop the flood of emotion at the time it's likely I would have had foresight into what I was about to receive in terms of love and support over the next few weeks. I have never for a second doubted that I have surrounded myself with some of the most amazing people the NorthWest (and now the US in general) has to offer. I 'm lucky to have met every beautiful person who has continued by my side both before and after this diagnosis.

 After a few weeks, as more and more people heard I'd been diagnosed with cancer the support became more thick. It became deeper. The love I've been receiving isn't surface level. It's not quick 'I hope everything's going to be okay's. The words people have been sending me, the love and intention that has been flowing my way has reduced me to tears of appreciation on more than one occasion. The thought that occured to me as one of my friends layed out on the table exactly how I had affected her life was that these people, my friends, my family... these people are reading me my eulogy. These words, these tidbits, these affirmations I've been given over the last few weeks are the things people reserve for death. So often we don't take the time to tell people exactly what they mean to us. So often our words go unspoken because we feel raw when we open up to those that are important to us.

 At funerals there are a handful of phrases you hear over and over again. I wish I'd spent more time with him. I wish I'd told her how much she means to me. I wish I'd seen him more recently. And then they go on to talk about the times that had meant so much. How their lives have been affected by the deceased. But why do we have to wait until our loved ones are gone to say these things? I've been blessed this month with living eulogy after living eulogy. And I am determined that for the rest of my life I will do my very best to give all of my friends the knowledge of their importance to me.

 And holy fucking cow guys, way to make this weekend amazing! Really really amazing.

 On Wednesday I went to my other mothers house in Bothell. My sister Lizzy and I spent three days readying the house for my birthday/pre-cancer surgery party. We cleaned, we did dump runs, we cleaned, we made a dinner menu, I dug a fire pit in the back yard, we cleaned, we made said meal... And promptly at 6pm Friday evening people from every part of my life showed up to show love. My friends with kids came and there were all sorts of tots running and crawling around the house. My friends from elementary school, friends from Jr High, Highschool, post-school, Seattle, and even a friend from working for Burning Man. My parents and their partners met friends from every aspect of my life. It was the most beautiful meshing of souls and I couldn't be more grateful for each and every one's presence.

 Oh, but that didn't cap the weekend off. Oh no. The next day was spent with those friends that crashed over. We lazed, we ate, we drank more beers. We cleaned (MORE!) and eventually I got to borrow a car and I drove everyone home. I spent a few hours by myself, pondering my future and pondering my friends.

 More time was spent with more friends. Another party was attended. Gold head bands were worn, stories were exchanged. The night faded into day and the last party goers rolled home. It was a beautiful beautiful weekend. It recharged me body and soul. I love my friends. I love them SO SO SO much, and I feel like I'm the luckiest woman to walk this Earth.

 When I woke, wrapped in my own blanket on the floor of my old room a very brief anxiety gripped me at the first thought of the day and the realization that my surgery is tomorrow.

 So I'll end on that note. A beautiful weekend, two fabulous parties, friends and family, and tomorrow, is surgery.

 Don't wish me luck (cause who needs luck when you got love!) So just send me summa that!

       Serious Love and Light
               ~Aden~Irie~

Over the last few years I have become more and more familiar with mythologies that have helped me draw lines around my idea of spirituality. Well, in reality these stories have been present my whole life in different forms. But it's been in the last few years I have sought out symbols and gods, characters and ideas that have began to give me guidelines with which to pull myself along into better understanding of the divine, as well as daily life and death. I have drawn parallels from culture to culture, story to myth, dieties to gods, characters and symbols. Poetry and prose, artist and author, all have been helping me to create a world in which I can understand the things that stir inside me. They've been helping me to understand my overwhelming sense of awe about the world and my existence. The beginning and the end. The mother, father, and child. The God and Goddess, the Warrior. Fire, water, earth. The Phoenix, the tree. Circles and stars, the sacred spiral, endless knots, and on...

 My mom has a couple of DVD's called 'The Power of Myth' several hours of interview with a man named Joseph Campbell, an American Mythologist. Only 36 minutes in, this snippet of conversation stirred me, made me aware of the mythologies I've been following that have done just exactly this for me.

Joseph Campbell on Mythology

Bill Moyer: So these stories of mythology are simply trying to express a truth that can't be grasped any other way?

Joseph Campbell: It's the edge, the interface between what can be known and what is never to be discovered because it is a mystery transcendent of all human research. The source of life, what is it? No one knows.

Bill: Why are stories important for getting at that?

Joseph: Well, I think it's important to live life with a knowledge of its mystery and of your own mystery and it gives life a new... vest, a new balance a new harmony to do this. Therapy and psychological therapy when people find out what it is that's ticking in them they get straightened out. And what is it that life is? I find thinking in mythological terms has helped people and visibily you can see it happen

Bill: How, what does it do?

Joseph: It erases anxieties, it's puts them in accord with the inevitables of their life and they can see the positive values of what the negatives... of what is positive... it's whether you're going to say no to the serpent or yes to the serpent.

Bill: No to the adventure?

Joseph: Yes, the adventure of being alive, of living.

 

nce again testing... Check one, two. Can you hear me out there?

 I'm trying to create a connection between my live journal and my facebook so I when I post there'll be a little note to tell you kids I've been writing.

Now let's see if this works...

 This morning we rose before the sun. A quick shower, warm clothes and piling into the car for the ride into the city for my pre-operation and anesthesiology appointment. I'm not really nervous, but I don't know what these appointments will look like. As we drive down the hillside into downtown Monroe, the light is grey but the morning is still beautiful. Traffic was minimal, thank you spring break. Driving across the water to the University of Washington mom and I talked about replacing the floating bridge... bike lanes, tolls, tax burdens.

 We're early. So we sit in a big waiting room with people in scrubs meandering around, conversing about little nothings, their mornings, their kids, I play paddle ball on my cell phone. Both my moms are there. When my name is called my heart skips a beat.

 In the little white room with no emotion, like always, a patient table with a sheet of thin paper pulled over it, when I sit down it crinkles under my ass. Neutral colored chairs, my two moms and the resident sit down. Heart pressure machine dealy, sharps containers... We go over all the things any doctor has ever asked me. Allergies, surgeries, pregnancies, general health, what I know already about the melanoma.

 When Dr. Neligan comes in I'm a little surprised (and disappointed) to find he doesn't have much of an Irish accent. I was told he's Irish. He's neither friendly nor cold, which I appreciate. He's matter of fact in a pleasent enough way. And this is what he lays down on the table for me.

( Collapse )

 I'm lookin at some serious healing time here.

 So he goes on to tell me it's not going to look pretty for a good while. They're going to actually sew my 5 day temporary bandage onto my nose, no, it's unlikely you'll find me posting post-op pictures, but we'll see. And he's honest. My nose is unlikely to ever be quite the same. Oh! My nose! This nose is coveted, you know!

 There are worser case scenarios. They include cancer that has spread, several more operations, scarring on my neck, much longer recovery time and chemo or interferon treatments. He finds these scenarios unlikely for now. So do I. =)

 I liked Dr Neligan's honest straightforward approach and I feel like I trust him. He's also like... a big deal at UW surgery. So, awesome.

 The rest of the morning was more medical appointments ... and 5 hours after we rolled into UW, we rolled out.

 Thai food for lunch in Wallingford with bio-mom followed by salted caramel and chocolate ice cream @ Molly Moon's on 45. Go get some! Mom shops for yarn and we head home because I'm tired... And kind of crumbling at the edges a little.

 One last thing and I'll be out of your hair. I have received so much love and support from my friends and family since I got diagnosed. I have been showered with text messages and short letters from friends. I have recieved phone calls from people I'd never expect to talk on the phone with and been surrounded with love and support that I couldn't ASK for. I'm just luck to receive it. I feel like such a lucky girl to spend this life with all these kids. And to keep on spending it with these kids.

 Cause we gots a whole lot more life to be livin.