Sunday, December 15, 2013

It's a Blowout Miracle - Ryan comes clean...

I know, I know... It's been a long time. For your patience, I shall reward you with total honesty regarding a number of things but probably most concerning would be cancer related so- here we go.

Before surgery, I was in a place in my life that I'd never been. I was happy, supported, and hell-bent on not really even being a cancer patient. I remember a moment in my car, alone, furious that I had breast cancer. Not that I had cancer but that I had such a bullshit, cliche stupid fucking cancer. Going forward with chemos, regardless of the side effects like NBD, I got this under control is kind of my modus operandi. There may be a problem in my life but it's kind of "over there" and if I can't just ignore it, I'll plow on through.

As some of you may have seen on the fb (or because you were there), my double mastectomy was wildly successful. The chemo got it all. And the night after having major surgery, I had twelve people in my room having a glow-stick dance party. I was released the following day and the next morning, William and I went camping. I was good to go, tough as nails. But then something happened and I'm still not sure what it was, really. I ended up in deep in a hole of pain that some days I still feel that I'm trying to claw my way out of. The surgery pain ended, but then other pains popped up- pain from the fills, pain in my body that has become terribly frustrating, tingling in my legs like nerve discomfort that just makes my body ache. And then there's the emotional pain. The fillers under my skin where my implants will eventually go are rock hard, oddly shaped, and don't sit evenly, meaning that trying to find something to wear that doesn't make my body look like a side-show is enough to reduce me to tears sometimes.

So, the next piece of the treatment puzzle was supposed to be radiation, which for some reason I just assumed I wouldn't end up having to receive. But then I was randomized to have it (related to a study and how well I responded to treatments thus far) and that's when the bottom dropped out. And that's when I went from being the darling of the oncology office to the rebel. After a series of clinical/administrative mishaps, William and I met with my radiation doctor and asked about the risks of having radiation. Here are just a few risks and side effects;
  • Increased lifetime risk for a heart attack or other major heart event
  • For every 1 gray of radiation (a unit that measures the absorbed radiation dose), a woman's heart risk rises by 7.4%
  • Rib fracture occurs when the radiation weakens the rib cage near the treatment area.
  • Permanent scar tissue on the lungs can occur
  • Fatigue and breast soreness will occur. The treated breast may also be rough to touch, red (like a sunburn) and swollen. Sometimes the skin may peel. You may notice firmness of shrinkage of the breast. You may also have mild tanning of the skin in the treated area which can be permanent.
  • Women who have axillary lymph nodes removed may develop lymphedema.
  • Brachial plexopathy can happen with radiation damages nerves in the upper chest. It may cause tingling, pain and weakness in he affected hand and arm that may be permanent.
  • Radiation pneumonitis is an inflammation of the lungs that can cause shortness of breath, a dry cough and a low-grade fever.
  • Radiation treatment CAN CAUSE A SECOND CANCER.
Then we asked her the million dollar question: What is my risk of recurrence having radiation vs not having it. If I have radiation, my risk of getting this cancer again is STILL 5 - 10%. If I don't have radiation, forgoing shitty side effects and dangerous additional health concerns, my risk of recurrence is 15 - 20%. Then I found this gem:

"For every 100 women given radiation, "one will have a recurrence anyway, four will have a recurrence prevented, but 95 will have had unnecessary treatment," Kunkler said. Since radiation did not affect survival or the risk of cancer spreading, skipping it "is a reasonable option."

I'm sure you can see why I'm declining this particular treatment. And it's cancer in addition to what's happened in the past twelve months of my life that have caused me to reflect on some things in my life and realize just how many lifetimes I've lived in this, my last incarnation.

There are many people for whom their life takes them on a methodical, linear(ish) path through the normal events that one can expect in their life. My path has been markedly more complicated in that when I see some debris in the road, I don't carefully navigate around it and manage any damage done to my metaphorical vehicle. I come to a screeching halt, and scramble in a different direction, typically picking up almost exactly where I left off but with new digs, new friends, and usually, a new look. My old life unapologetically vanishes as if it's never happened. 

Thankfully, my most recent... obstacle was William, who became the engineer, rerouting my train and saving me from derailment. And what we share is so incredible because it benefits everyone around us. Just last night a friend made a remark similar to comments we hear with some regularity. She said "William and Ryan are the only couple I know who actually really love each other." We hardly know this person, but she feels it. Then I think of the couples I know and I can only think of one that I would say that about. What is this thing, this experience of being part of and giving a love that is practically tangible? My relationship with William is the magnum opus of my soul and of every lifetime I've experienced. He's my every all the things and through all the things below, I am his.

Here is the lifetime that's happened in the past twelve months.

  • William and I met 
  • William got his first tattoo
  • I moved into William's studio apartment, purging most of my possessions and past life.
  • We spent a week out of town over the giftmas holiday and decided to get married, so I promptly got divorced, for the third time (and if you wonder where this lack of concern for the "sanctity of marriage" comes from, you can ask my mom who has married three times, or my dad who has been married six times. So yeah, my parents combined have been married NINE TIMES.).
  • The book I contributed to was published
  • Midwest Vegan Radio came to an abrupt end
  • I met a woman who has thus far, with the help of her spouse, become our live guardian angels (and who happen to be the only other couple I know who is so in love that other people experience it).
  • William and I both got tattoos at a friend's birthday party
  • I got a new job in West St. Paul
  • We met a very special new friend and subsequently a whole group of new friends, most of whom are absolutely beautiful gems of human beings that pull together and support each other and for how much I've struggled in the past with friendships and the presentation of myself, I actually believe these people like me and I never have to question where I stand with them (and if I interacted with you on the 2nd night of the blowout, you are one of those people).
  • My grandpa Sunshine died
  • I got diagnosed with stage 3A IDC breast cancer and started aggressive treatment
  • We went to vegas for a last hurrah of fun, in case I was going to spend the next year as an invalid.
  • Then the day after my first cancer treatment, quietly, without any announcement, we got married at the Sound Gallery during a rap show on 4/20/13, with Botzy and Lauren as our witnesses and Laura as our officiant. Rather than taking either of our last names, we changed our last name to Veldt in an homage to a number of things including Doomtree, and obviously the Ray Bradbury story The Veldt.
  • We went on an impromptu trip with no bags or plan to House on the Rock in WI
  • And then, because our apartment in Uptown was on the third floor and cancer treatments make you tired, and my commute made me want to hurt myself, we moved to a garden level apartment in St. Paul on Grand Avenue.
  • We had a head shaving benefit at Salon Ori where a number of amazing people shaved their heads to help raise money.
  • Berxerxer showed up at our door, then later we fell in cuteness with Fat Professor and took him home
  • We had an epic sleepover wedding reception in a cabin in the woods of Duluth and William's mom came to visit from Alaska
  • I put back together a friendship that had completely unraveled, which is growing stronger than ever
  • In the midst of cancer treatments, we had the absolute most amazing summer going to too many rap shows to count, meeting more really incredible people, and working on our friends' CSA farm, falling deeply in love with simplicity
  • William quit his jobs in Minneapolis and started working in St. Paul
  • We both said goodbye to some relationships that did not serve to make our lives better, including my dad
  • William bought a fancy new bike and I bought a fancy new car. And we sold Buttercup to a friend
  • I had my second surgery of the year (the first was having my port put in for the chemo drugs, the second was the double mastectomy)
  • I found my previously lost religion and went to Family Gathering for the second time
  • I started a mentorship with a local Medium
  • We went on a road trip through Madison, St. Louis, down to New Orleans, over to Galvaston, and up to Austin, then 22 hours home. No agenda or plans, just the two of us in the car.
  • We started a business
  • Our apartment was broken into so we moved again to a third story apartment on Summit Ave around a block from the Xcel overlooking what looks like the whole world at night.
  • My grandma Sunshine had a heart attack
  • Our fancy new car was hit while it was parked and currently lives at the body shop while we drive a newer but shittier rental
The lifetime I had before this one was five years spent on a couch, listening to Tom Waits, thinking only of a someday that was never going to come. I can't believe how much time I spent on two hour bike rides around Uptown that would start around 1 am. How many boring miles I walked trying to escape the boring couch.

A lot has happened, but the only comfort for me in life is the change. For, as they say:

"Witch's work is turning the wheel and round the wheel doth turn.
Time wheels, the world wheels, time and space embrace in the wheeling circle, the dance of the wheel.
The only constant is constant change: the nature of a wheel is to turn.
Witch's work is turning the wheel: to divine the course of change and to aid it, to add her will to the will of the wheel; for the witch is the agent of change.
And a witch's work is turning the wheel and round the wheel doth turn."

The world needs to watch out for William and I in 2014- we are going to be a force.

kisses, kitties, and chocolate chip pancakes,
Ryan