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In the process of starting a new grassroots movement in downtown Vancouver, Washington. In the process of fighting terminal cancer. In the process of learning to be a better neighbor, husband, father, Christ follower, and friend. As initiators of the Grassroots Conspiracy we hope to be a part of a movement of hope, imagination, and transformation in our developing downtown neighborhoods.

People Make Things Happen (stolen from Brady)

There are many people in downtown Vancouver who I have not yet met but whom I know of. They’re people that I am aware that I should meet and I know that it’s only a matter of time ’till I do. Brady is one of those guys. I went to a benefit concert for Brady a few months ago that was hosted by the same Anni that hosted my fundraiser last week. At the event I was never actually able to meet Brady, but I’ve seen his face often since then around downtown. I’ve heard amazing things about him both as a person and as a musician and it was at the fundraiser hosted for us last week Brady introduced himself to me and we had a great (though brief) conversation.

I say all of that to get to this, he wrote the piece below last week and I thought it really interesting so I thought I’d repost it for you.

Social media websites like Facebook can be an extraordinary tool when spreading awareness or organizing interested minds for an important and worthwhile cause. However, in our community today, even without Facebook, fundraisers and donation charities are largely successful because of word of mouth.

I’ve often wondered how our community events, especially fundraisers, would be different if Facebook were not an element.

I recently heard that a neighborhood pub, Shannahans, hosted a successful fundraiser, Saturday July 16th, for the family of Jim Schiefelbein. I never saw a “Facebook event” created for it, and there was no advertising on the wall of the Facebook page for the restaurant. To my knowledge, the only public electronic acknowledgement of the fundraiser event was a comment posted on their wall the following morning, by the restaurant, thanking everyone for their contributions, including the hard working staff, and noting that over eight thousand dollars was raised.

Most recently, I have observed that Facebook has been an excellent channel for communicating to online communities the details of a benefit event, such as the fundraisers hosted by Pop Culture for Ryan Woods and by The Brickhouse for myself. The advent of “Facebook events” seems to be a game-changer. It is genius in that all of the important information is collected in one place within the online community and available electronically, which of course also means smart phone users can access it instantaneously. It beats the hell out of a paper flier in so many ways. And also, as is the case with the technology of social media websites, promoting the fundraiser is as easy as clicking “share,” and immediately the information has been made available to new potentially interested minds. It seems almost effortless in comparison to what we did before Facebook.

What did we do before Facebook?

We did what we still do today; we talk to people. A real fundraiser event is like a chain letter; You tell one person and that person tells two people. It’s a chain of events put in motion by one action, and not a one-on-one. Spreading awareness can be done in so many ways including using the telephone, writing to the local newspaper(s), writing to local officials, sending emails to an ever growing list and using other local advertising channels such as radio in addition to using online social media websites. It just seems like the latter is so much easier right? I suppose the term smart advocate could be used to describe the individual who is likely to advocate through the easiest and most instantaneous method, such as “clicking.” I truly don’t mean any cruel judgement by that statement, it just seems fitting. It still gets the word out but I believe some methods seem to reach farther than others. It takes a village to save a villager. In my eyes it is apparent that in the end the real difference comes with the real communities; the Families, the Life-Long Friends, the gathering of Long Lost Families and Associations, as well as the gathering of New Friends and Associations, and the Church Communities.

* What I appreciate the most about a Facebook event page is that all of the information needed for an individual to get involved is collected and made available in one central location, so that it is easy to find, and because of this, it is easier for someone who may want to get involved to do so.

 

I love that both Brady and I attended fundraisers for someone we didn’t know! I love that we did so because of the nature of the nature of the community forming in downtown Vancouver. People do this, they invite, they spread messages and ideas and opportunities, people make things happen.

Growing Old…Fast

The roller coaster just keeps going! My transformation from a 28 year old young adult into a 75 year old man is happening faster than the yearly crawl that my upcoming birthday (and life in general) normally promises. Not only did we get married young, have our kids young, get a minivan young, plant a church young, and have my first cancerous tumor young, but now I’m the proud owner of an oxygen bottle that I tote around with me wherever I go! I remember being creeped out as a child by people with the oxygen tubes that went across their upper lip–always wondering “how far up their noses do those tubes go!?”

Every day when I wake up I need a little help from my wife, the pill bottle, and the shower to get my back in good working condition. Due to me still recovering from the surgery and the lack of stomach muscles (because of my paralysis) my back is pretty jacked up. It spasms pretty often while in bed and when I wake up in the morning the tightness across the blades is quite extreme. But on Friday when I woke up it felt different. There were sharp pains in my mid back, side, and upper shoulder. The pains were so sharp that they kept me from taking deep breaths. We had plans later that day to drive two hours out of town to see some dear friends who had flown in from the midwest so I acted quickly and setup a massage for 11:30 to see if we couldn’t work through this stuff.

The massage didn’t make a huge difference with the sharp pains, but between that and some vicodin I was able to have a good time and make it ’till evening. Well, to make a short story not so long, come evening time the pain got worse and my ability to breath got worse. My wife called our oncologist who sent us directly to the ER. At the ER they diagnosed me with lots of small blood clots in my right lung and a few in my right leg. Even as they put me on blood thinners and IV drugs (always quite the fun experience) the pain got so extreme that at one point I found myself curled up on the hospital floor while trying to make it to the bathroom. Finally they put me on oxygen, found a drug that managed my pain better, and even sent me home that night.

It is crazy to think about how quickly things change. A few months ago I was a healthy 28 year old young man. A few days ago I was too young to have cancer. Now I’m a 75 year old man in need of some ear plugs ’cause kids these days play their music too damn loud!

In an instant, in one morning, in one week everything can change. And there’s nothing we can do about it. We can fight it and be miserable. We can avoid it and live in ignorance. Or we can embrace it as a part of being human and grow from it. I hope I choose door number three.

8 Reasons Why Steroids are Bad

Here are my top eight reasons why taking steroids sucks:

  1. ‘Roid rage. Steroids opened up in me anger that I’ve never experienced before. I could get mad at a fork if it didn’t make it to my mouth correctly…and thats no lie.
  2. Backne (as in back acne). I felt like I was in Jr. High again with my whole back, chest, and arms covered in acne! Good thing I’m not much of a swimmer ’cause all the girls would have made fun of me.
  3. Lies. Anyone who told you that if you took steroids you’d be better at sports lied. I’m not better at sports and I’m not stronger and as a matter of fact I think I’m worse at sports now than I was before my steroids. Needless to say I blame all of this on the ‘roids.
  4. Insomnia. Gone are the days of going to sleep at 1am and waking up at 4am everyday. While I do miss those quiet mornings (terribly actually) I don’t miss the lack of sleep.
  5. Water Weight. I’ve got chubby arm pits right now. Did you even know you can get chubby arm pits? It’s due to my body going off steroids, ‘roids cause your body to retain water in strange ways, for me this included asymmetrical chubby pits.
  6. Swelling. This is probably an extension of the water weight, but the swelling that happened in my face was creepy. In a matter of minutes I’d go from normal Ryan to Swollen-Faced-Ryan. It would happen almost immediately and could last for minutes or days. Not cool.
  7. Headaches. The day that I was finally off steroids was the day that my headaches began. For ten straight days I had pounding, debilitating headaches. They’d last from the moment I woke up until I fell asleep. For the first few days no cocktail of Vicodin or Ibiprofin would help and I’d just pound my head agains the wall waiting for relief.
  8. Foot Cheese. That’s right, I said it. While on steroids the bottom of my feet started to sluff off every day. Every day a whole layer of skin on the bottoms of my feet would just crumble off…it was gross…and messy…and would have been painful had I been able to feel my feet.

Creating the New Normal

A good friend of mine started saying the phrase “we’re trying to create the new normal” a lot lately. I like that. I think it’s a good summary of what we’re trying to do with the Grassroots Conspiracy here in downtown ‘Couve. Normal often sounds appealing. Teenagers spend most of their time and energy chasing after this illusive idea of being normal…But as Dave Ramsey would say, you don’t want to be normal ’cause normal is broke. While I’m not necessarily talking about money (though how we use our money to bless the world is a part of it) it is true that we don’t want to be normal! With regard to community and how we do life, normal is to be lonely. Normal is to busy. Normal is to spend every afternoon and evening watching TV. Normal is to idealize self sufficiency. Normal is to eat unhealthy and to eat on the run. Normal is broke (I mean this both financially and with regard to how life is lived). Normal sucks and does not produce the kind of life we were intended for.

Part of what’s been so beautiful in how we’ve been cared for up through this stage of our fight against cancer is that it is creating a new normal in our community. YOU are a part of creating a new normal for what it looks like to care for people in distress. Normal is to respond with help when things are urgent, when things are fresh and exciting, and to respond for a short period of time. Normal is for Jess and I to not ask for help and to suffer quietly in the name of self sufficiency and pride. Normal doesn’t work. Normal is not the picture of community that we are trying to create. The new normal is going to fight to be different. It means that the person in crisis is willing to receive help, it means that second and third waves of help come after the immediate emotional response. It means that lines are blurred, that everyone gives and receives as they are able, that every gift is valued no matter how big or small, and that awkwardness is embraced rather than allowed to hold us from speaking.

So thank you to all of you who are a part of helping to create a new normal for how we care for those in crisis and do life together. In no way are we done or have we arrived (arrival is a mirage, process is a reality…right?) but we are continually carving out a path toward what it means to do life together. The new normal is counter cultural and it necessitates a community of conspirators who are willing to rise up and embrace that counter cultural posture as a part of a movement of people who are different…because if we’re not different then we’ll just end up normal…and who wants to be normal?

Radiation, Chemo, and More (surprising) Good News


It’s been hard to squeeze out an update recently due to what has turned out to be a bladder infection and nagging steroid withdraws (I’ll write this blog post on Tuesday). One thing has not changed: we always receive our news on Thursdays. Another thing has continued to change: we’re getting good news now rather than bad!

On thursday I met with my Oncologist (the week before it was my radiation oncologist) and let me just say that she is amazing. Not only is she excited to work in partnership with our naturopath but she has talked with more doctors from more universities and hospitals from around the United States than I can list off. I can probably honestly say that hundreds of medical professionals have looked at my case; even as far back as June 8th there was a monthly gathering of physicians who all gathered around my case. Their prognosis? That I’d probably not walk again and I’d be dead within a year due to the fact that everything pointed to a glioblastoma cancer. Things have changed.

As of last week the Mayo Clinic has determined that my tumor is a level three astrocytoma (known as an anaplastic astrocytoma). This is huge amazing and wonderful news especially considering that for a month there was no doubt that it was a level four glioblastoma. It’s funny that had we gone into this being told I had a grade III cancer it would have been a sad day–but after you’ve been dealing with the beast known as a grade IV cancer…this is looking pretty good! The jump from a level three to a level four (if I understand things correctly) is huge. While we didn’t speak in these terms–a level four glioblastoma really implies a year of life with hope for a few more. Terminal is the best word to describe it. It’s a beast that doesn’t really die that is constantly attacking your body and moving and taking space, etc. While I have yet to do all the research, a level three is still a cancer that you assume you’re going to live with, but it’s is one that does not immediately imply death. (as many of you know, I am simply writing to you from the medical perspective. Miracles happen that defy all rules and odds.)

The fun of waiting for medical results is not over yet! My tumor slides are in England right now being studied at Cambridge. There are still properties in my tumor that are freaky and odd that they’re trying to figure out. They anticipate knowing more in three weeks, but it will not change how we move forward. On Thursday I start my radiation and chemotherapy–both will last for six weeks. I think its exciting that on the day I start all this good stuff I get to finish the day partying with all my friends and family at the fundraiser down at Pop Culture (if you’re not aware of this email me! ryan@renovatus.com) It’ll be a great and fitting way to end my first day of treatment–in community.

(Update: interestingly enough a few months after they ruled out glioblastoma they decided to ‘reintroduce’ it as a possible reality. And, in fact, they are treating it as such. As it turns out it can often be much more difficult to diagnose cancer specifics as one might assume.)