Tag Archives: Cancer

VIDEO: Sifting at Exponential

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Jess and I spent an amazing couple of days in Orlando, Florida at the annual Exponential Conference. To be perfectly honest, Jess and I don’t belong very well in many circles. We kind of fit in the church planting community (in other words we start new churches) but the manner in which we’re going about things does not lend itself to a complete match. We kind of fit in the non-profit neighborhood development world but the spiritual bent that we bring to it does not lend itself to a complete match. We’re a part of the Christian community but we don’t go to church. Jess fits the urban hippie community but the reality is that we’re recovering homeschoolers. We can’t be a part of the homeschooler community for oh so many reasons that I won’t go into here. We just don’t fit in any box very well and it can be down right frustrating. BUT…BUT…going to this conference every other year always brings blessing. It’s a good scene, filled with good people and good books (what more do I need?) This year, especially, the content was inspiring. Instead of talking about how to start new churches (which is a good thing to talk about) they instead focused on how to be the right kind of person who is able to start new churches. In other words, the focus was on the being more than on the doing. And I like that. It’s less about being a rockstar pastor and more about being Jesus-filed lover of people, a good husband, and a loving dad.

Well, within that vein they asked me to briefly share a word from my story to start off the conference. I asked my mom to record it (Oops! Bad idea to ask the woman who birthed you to record a video with a steady hand while her son talks about his death! Cruel cruel request)

I’m hesitant to post this video for a few reasons:

  • It reminds me of the 50lbs I’ve gained over the last 9 months
  • It annoys me to see my wife just sitting there as a gorgeous prop when I know she’s got tons to say…more to say than what came out of my mouth and probably more articulately.
  • It reminds me of the fact that when I got up there I completely forgot everything I wanted to say…and I hate that.
  • It reminds me that I actually got nervous…I rarely get nervous! I hate getting nervous!

Here’s why I am posting it:

At the end there are five thousand people raising their hands in solidarity with my family praying for my healing. The amazing thing is that each of those pairs of hands represents a different faith community from all over the United States. IF God does not choose to bring healing it ain’t gonna be because we didn’t bug the hell out of him! That’s for sure! It gives me great confidence that if I die I can rest assured that it was not without a fight–both on the spiritual level, the medical level, relationally, medically, metaphysically, emotionally…and whatever other -ally is available.

Thank you Exponential folk for letting me play this small part. Thank you for supporting my wife and I. Thank you for everything! I hope that whatever happened to bumble out of my mouth was both beneficial and generative as we all committed together to be honest about our sifting and how it is shaping both us, our families, our churches, and the faith communities that do not yet exist.

peace.

Blaming God for Cancer

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One of the questions I often get is “do you blame God for making you sick?” My quick and easy (for me) response is “no, not at all.” I don’t blame God for making me sick, I don’t think he made me sick, and as a matter of fact I think he’s equally sad as I am that I’m sick.

Hold on.

Before I dig deeper here let me make sure you’re fully aware that in no way am I going to make an argument defending God, defending the idea that if God has the ability to heal me and does not he is somehow culpable and guilty of killing me, etc. Some of you are raising your hands, shaking your fists, and demanding that God be put on trial (rightfully so maybe). Others of you are standing up, shaking your fists, and are making a list of bullet points to absolutely prove why God is just in killing me ’cause he’s teaching me a lesson (or disciplining me or what have you). Well let me say that I’m not going to please any of you because first off I don’t want to attempt to articulately figure all this out. Secondly I don’t believe that it’s my job to defend God. He can do that himself if he so desires. Thirdly, I don’t know if I’m able to make an adequate argument.

So.

I don’t believe that God made me sick. One of my most foundational beliefs, something that everything else builds off of is that God is good. The clearest picture I have of who God is, is in Jesus. My belief is that when I see Jesus I am seeing God. Therefore if I want to know how God feels about sickness I look at Jesus. If I want to know what God thinks about humanity I look at Jesus. If I want to know what God would do at a party I look at Jesus. If I want to know about God one of the most clear ways is to look at Jesus…’cause they’re kinda one and the same. When I look at Jesus I see a guy who grieved over the brokenness of the world, who wept over death (to the point that he occasionally reversed it), and who didn’t seem to be satisfied with sickness (and healed accordingly).

Cancer is a reminder that this world is utterly broken. Things have spiraled out of control and continue to do so. War, hatred, sickness, disease, addiction, abuse, lust, and greed (among so many other things) fight to control our world and transform it into what it was never intended to be. These things, as we experience them, remind us that things are not as they should be, things are not right! And in no way do I have space to believe that God is the culprit. Nope. Instead, my belief is that God is the source of all things good, of love, of hope, of peace, of beauty, of sex, of joy, of kindness, of generosity, of gentleness, and of fresh organic strawberries. Those things come from God because that is who God is–he is good. Cancer is not one of those things. It does not come from God. Cancer is in opposition to God–hell on earth, if you will. God hates cancer because it is in opposition to what he is all about: life.

So do I blame God for my cancer? Absolutely not.

The question, though, that we’re all obviously stuck asking is “But God, why don’t you heal me of it?” If he is able to heal me and does not isn’t he still equally culpable? Let me throw out some random thoughts here. This isn’t an attempt to defend things fully, but rather a random collection of my own musings about this question that obviously plagues me from time to time…

  • At some point every single person is going to not be healed. What I mean is that even if I get healed now, at some point I won’t be…’cause at some point I’m going to be deader than dead. Whether it’s now or later it’s gonna happen. Healing is the ultimate bandaid, it’s only temporary.
  • I have absolutely no idea why one person gets healed and another doesn’t. I want to know why my friends eight year old daughter didn’t get healed from the same cancer that I have. Of all people little Hadley deserved to be healed–more than me and more than you. She was innocent and beautiful in every single way; she deserved healing. But she didn’t get it. And I don’t know why. If Hadley wasn’t healed why should I think that I deserve to be healed? Most likely…it has nothing to do with deserving it…right?
  • I feel complete freedom to be pissed at God, to tell him what I think. I’m pretty sure God can handle my anger. Just because I don’t blame doesn’t mean that I’m not mad that I haven’t been healed yet. There are certain things where anger is a completely appropriate response…and I think cancer can be one of them. And in no way whatsoever do I think that God gets mad if I express anger. Actually, as a matter of fact, I tend to think that God is pleased (maybe not the best word choice) when I am angry about things that he’s also probably angry about!
  • I try to realize and remember that I don’t know jack. I mean, seriously, what kind of perspective do I have in the big scheme of things? I think about my kids at Disneyland. They kept wanting to buy those big giant suckers that look really cool. But the thing is, they taste like crap and my kids hate them. Every time they buy one of them they regret it and wish they had bought something else. I know better than them. I do. I’ve got more perspective, I’ve got a better memory, I have more information…I just know better. I’m the dad. Ok, maybe that’s not the best illustration, but the idea that God knows better is important to me because if he truly is good (as my foundational assumption tells me he is) then I can trust that he’s not trying to screw me or those I love over. All of his activity is first and foremost motivated by love. always. (more than I can say for myself as a father or any other dads I know).
  • In his time on earth Jesus didn’t heal everybody. We read some of the spectacular stories of him healing somebody while ignoring the fact that he stepped over one cripple to get to another who then walked away on his own two feet. At times it had to do with the request made by the individual–but the reality is that there were many in Jerusalem and the surrounding area who remained sick, who stayed dead, and who Jesus did not heal. I don’t know why. But it’s true. And don’t tell me that it’s just a matter of faith. Don’t tell me that the only reason some were not healed was because they lacked faith–try reading the rest of the Bible and tell me that Stephen, James, and every single other apostle and leader and follower of Jesus lacked faith ’cause guess what? They all died! Some of them even brutally and tragically!
No, God never made a promise to heal me. I hope he does and I’m going to bug the hell out of him asking him to do so. But he didn’t make that promise. He promised me that I’ll always be loved. He promised me a new body that doesn’t suck. He promised me a restored world that isn’t broken. He promised me that I’m created in his perfect image. And he promised me that he’s faithful and will keep his promises. And he chose to let himself die to prove it.
Why do I not blame God? I guess it’s because over the years I’ve come to trust him. If you’re new to faith or the idea of faith I wouldn’t expect you to trust him like that necessarily. Trust is earned right? But I hope that my story, as your seeing it lived out, is inviting you to give him a chance. Let Jesus grow on you a bit and see if he doesn’t earn your trust eventually. It’s a scary thing to open yourself up like that, but it just might be worth it.

How To Help

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(As things change I will continue to update this blog post. So below there have been added a number of new bullet points capturing a few alternative options to be involved.)

I’ve just added a new tab to the top of the blog that reads “How to Help“. So many people have asked this question or have been asked it by others that in a random moment of clarity I thought “Hmm, maybe I should post a written response…” Revolutionary right?

Many people have asked how they can help our family and/or support Grassroots Conspiracy financially. Let me do my best to give you a few options:

  • To help fund our trip to Disneyland (that just happened, is going to happen again, and is still being paid for) you can make a tax deductible donation via paypal. Send money to troywagner@mac.com and mark it as a gift for Ryan Woods.
  • To setup monthly tax deductible donations that supports our work in leading Grassroots Conspiracy you can go here: http://su.pr/1VwRyQ
  • To send money or checks that support our work in leading Grassroots Conspiracy you can mail a check written to “Renovatus” and earmarked for Ryan Woods or Grassroots Conspiracy to PO Box 873575 Vancouver, WA 98687
  • To donate monies that go directly toward our medical expenses you can deposit money through any Columbia Credit Union bank via account number: 444289
  • Another way to donate monies that go directly to our medical expenses is to send money via paypal to jonesandindia@gmail.com
Here are a few alternative ways to support our family:
  • Help us tell our story. Forward people to my blog, invite them to follow the posts concerning cancer, and invite people to sign up for our Downtown Dispatch.
  • While my future health is unknown a group still intends to move forward with (what will become) our annual Summer fundraiser. Last year on July 17th hundreds of people showed up at Pop Culture to support our family via live music, raffles, and donations. It was overwhelmingly beautiful. The idea is that this fundraiser will happen each year with or without me, with all proceeds going toward an appropriate destination. Please anticipate this event with us!
  • As other events and fundraisers develop I will add them to this page. At this point a local restaurant is hosting one on April 29th. To find out more visit the facebook info page: http://su.pr/4KxeYP
  • We are still trying to figure out what helpful meals and housework will look like in our current context. As this develops we will provide contact info here.
I know I have just provided too many options and most likely convoluted things a bit! The reality however is that it all ends up in the same place regardless of what method you use. Especially if things are nearing the end as the doctors say that they are, the lines between medical expenses, special trips with the family, and part-time salary wages from the church are becoming more and more blurry.
Please feel free to contact me with questions if you need clarity or further information. Email is preferred: ryan@gr-c.org

How to Create Dying Memories

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So you’re dying and you want to make every moment count, you want to create amazing memories over your potential last few months, you want to cross things off yours or your families bucket-ish list, you want every single moment to be special and memorable. So you go to Disneyland…or at least we did are.

First off let me say that we’re having an amazing time. But secondly, and this is where I’d like to dwell, it’s not all it’s cracked up to be. Disney isn’t the problem–it’s as backwards to what we believe in as ever and as amazing and fun an experience as ever. The problem is that no matter how much fun you want to have, no matter how many amazing things there are to do, no matter how many people (surprisingly and in painfully gracious ways) give generously to allow you to do whatever your heart desires…you’re still dying of cancer. And we all know it. I know it. My wife knows it. And my children know it. We are not necessarily talking about it, but it’s there like a dark cloud. In fact, there have been a few moments when my wife and I realize that we seriously only found out and told my kids that I’m dying just a couple of days ago! It literally JUST happened. What this translates into is that my son Jones’ anxieties are at record levels (if you know him and the fact that he has an anxiety disorder you understand what this means), Jess and I are emotional messes, and India can’t function unless she’s sitting on my lap (on my wheelchair). The intensity is painfully thick…painfully.

So what do you do? How do you live in the tension between reality and ideals? Here’s what our meager attempt to allow this trip to be what it needs to be while at the same time trying to make it an epic experience in and of itself is turning out to look like:

  • No pressure. None. If we don’t hit up every ride, if we don’t hit up the best rides, if we miss out on something “important” we’re trying to remember that it. does. not. matter. Not one bit. The point is to be together. Translation: headed into day three we’ve done all of one ride in California Adventure, we haven’t seen any shows, and haven’t hit up three of the ‘big’ mountains yet. It kills Jess and I (who happen to be professionals when it comes to sucking the marrow out of DL)
  • Pretend that money doesn’t matter. We’re not excessive here (I’m not sure we’re physically able to practice this one considering it goes against every bone in our bodies!), but part of the freedom we’re trying to give ourselves and our kids is that they/we can order what we want for dinner. That might be normal for you, but rarely in my whole life have I ordered whatever I want. You share, you buy the smaller version, etc. Stuff doesn’t bring happiness and doesn’t healthily fill a void, but it is fun sometimes! So we’re letting the kids buy a few extra souvenirs, an extra churro here or there, we’re letting them buy those expensive balloons that we know will still be deflated by the morning regardless of cool factor and cost, etc. Translation: we’ve spent more than expected and I’ve eaten well. But lets not lie here, no matter how much you’re willing to spend…a grumpy emotional kid with texture sensitivities and high anxiety will not like anything you buy for dinner! One direction that we’ve chosen to take is to spend a bit more money on memory-type souvenirs such as artwork and photography…and I don’t regret any of this one bit.
  • Pay attention. Probably more than anything it’s this one that matters. The kids need attention, they want it, they deserve it, and as witnessed through their occasional outbursts they demand it. When it comes down to it they could care less about the rides or the food; what they want is our presence, they want to know that even though dad might be leaving he is still here right now. Translation: cell phones haven’t been out much. My legs are raw and have scratches all over them from kids sitting on my lap. Jess and I are fighting being grumpy because while the kids need attention we want distraction more than anything else! 
  • Be Gentle. This is where the rubber meets the road. Stress, intensity, Disney, death, sleepiness, and anxiety amongst other things leads to a context where we’re each needing more gentleness and grace from each other more than ever and yet are feeling less equipped to dole it out than ever before. If this trip is going to work (and it is) it’s got to be on the back of a gentle and kind spirit toward each other. Translation: I’m failing here painfully! Or at the very least I’ll have segments at different points of each day where I come to the awareness that I’ve failed miserably. Jess and I are working together, however, on gently reminding each other of our own intensity and lack of gracefulness in our responses to others (namely the two little ones we brought with us).
  • Be flexible…but remember to eat. Flexibility has been a huge importance…but what we learned today was that it can’t come at the expense of taking care of ours and the kids’ actual needs. There have been times that we’ve all been having such a good time that we forgot to eat a meal…which is fine unless your emotional rope is already a twisted, knotted, and tangled mess. Flexibility has allowed us to make it this far; flexibility coupled with proper self care will get us home in one piece. Translation: I think I already made this one.
Don’t be fooled, though, this trip has been magical thus far. No joke. Staying at the Grand California Hotel has been one of the most amazing travel experiences of my life. No joke. My kids love it and would often prefer to hang out on the hotel’s premises instead of going to the theme parks. When we showed up on the first day and greeted my children by name at the door only to quickly give India a signed photograph from a handful of Disney princesses she not only beamed and giggled like a school girl but then turned to Jess and said in the most whispered and sacred voice that can’t be captured via blogging “…mommy…” it was if it was all she could say. Beautiful. Watching Jones go through Grizzly River Rapids with his incredible schemes for never getting wet (that at this point have worked 100% of the time) is so funny and so ‘Jones’. Jess and I keep looking at each other and wondering how we were able to go on this type of trip. We feel incredibly lucky blessed.
I guess what I’m trying to capture here is that I think the collection of ‘last moments’ that we’ll be experiencing over the next 3-6 months (though I’m eager to be completely off in these projections! I’m looking forward to being made a fool when 35 years down the line I’ve got to pay all of you back who are/have helped to make this trip happen) will not be defined based on context, money spent, food eaten, or any other externals. Don’t get me wrong, they are incredibly important. They are, they are very important, hence the reason we’ve got a growing list of places that we would like to go to over the next few moments. But that simply provides a memorable context, they DO NOT define it. It’s the raw knees from kids sitting on them, it’s in the moments of grace and gentleness, it’s in the conversations that happen, the games that are played together, the laughing and crying that happens together, and the “ordinary moments” that will in the end create the extraordinary moments that we are all craving.
Translation: I’m making all this up and I can only say that I think this is what I think. This is my first attempt at all this (my first attempt at having 3-6 months to live). I’m hoping that this is just a trial run and that I’ll get another shot at this later (I’m shooting for having 3-6 months to live in 30 plus years). But until all that’s made clear I’ll just keep trying and keep typing along the way.
Thanks for reading.

Talking to the kids about death

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Lets get the good news out of the way: brain scans are good and clear.

While conversing with my doc about the brain scans we went ahead and asked her a few more pointed questions…and essentially here’s where we’re at.

My time is short. The moment that Jess and I have talked about in theory is now on us where we’ve got to live as if I only have a few months left…because unless some drastic healing happens (which is ALWAYS possible) I only have a few months left.

It hurts to think about.

Even more painful, however, was to talk with our children about it today. We all sat on the bed, the same bed that we sat on nine months ago when we told them that I had cancer, and told my children straight up that their daddy was dying. Mom, dad, and India sobbed. Jones attempted to understand it. India simply said “daddy I don’t want you to go” and then she curled up in Jess’ lap and cried with us for about twenty minutes. Jones’s first response was to yell “No!” with quite a bit of emotion only to be followed up with a really interesting and clear decision to not be emotional about the matter. He wanted to talk about heaven, about cremation, and about my new cancer treatment. He drew pictures of me being buried, of me ascending to heaven, of my new home in heaven, etc. He wanted to know if he could bury me with some of his Legos; he had lots of random (and funny) thoughts. Eventually he and India transitioned into caretaker mode. They picked every flower that they could to give to me, they created a prayer space in our backyard to pray for me, and they did sweet things like getting me water and snacks. Jones even offered to take over Grassroots Conspiracy for me (he also suggested that Jess remarry). Here are some quotes from along the way:

  • “Dad, do you want your scull and dead body to be burned up or buried?”- Jones
  • “Just about an hour ago I was cursing cancer. I was saying things like ‘stupid cancer, I hate cancer’ these were the words I was using to curse cancer…But what if I said ‘you stupid fuck cancer?’ I mean, i wouldn’t say that ’cause it’s bad because it’s combining two bad words ‘fuck’ and ‘stupid’…but, you know, it’s just how I feel.” -Jones
  • “Which graveyard is daddy going to be buried in?” -Jones
  • “Dad, have you made out a last will and testament yet? Because I’m wondering who you’re giving your Nook to. Because…I like to read…and it kind of fits me.” -Jones
  • “I’m going to miss you dad when you’re in heaven.” -India
  • (after drawing a picture of me in heaven with God she then drew a picture of me with a penis…and then said…) “Well I sure knew that would cheer you up! I think myself so cute and cheerful!” – India

The rhythm that this cancer seems to have owned both before and after surgery, before and after radiation, daily chemo, and now monthly stronger chemo is to have a month or so of rapid growth followed by three or so months of inactivity and stability. If this pattern continues then we can anticipate that we’ve got about three to four months of stability where we’re at and come August there will be a period of new tumor growth. The major problem now is that there’s very little space for my tumor to grow anymore! There’s very little left in my central nervous system to be taken over by cancer besides my brain and the continued strangulation of my spinal cord. So new growth essentially implies death or complete paralysis.*

There’s still hope, there’s always hope. The next set of drugs that we’ll most likely try isn’t some bottom of the line last ditch effort–it’s a good option that has a decent success rate. Additionally we’re continuing our constant work with an amazing naturopath, dietary stuff, and all that jazz. There’s always hope.

But (and yes, there is a but). But it has come to that time where we have got to adjust our life to the new reality (always hoping that this reality is not what comes to pass). When you’ve only got six months to live what do you do? Who do you spend time with? How do you spend your money? How does one leave a legacy behind? What things do I need to stop doing? What things do I need to start doing? Ahh, so many questions! And, honestly, all I can think about is how few memories I have of when I was four years old. Will my daughter even remember me? The need to both create memories and to spend time chronicling stories and thoughts via letters, videos, etc. seems to be of the utmost importance.

Anyway, at this point I can see that I’m rambling. I obviously have so many thoughts that I’m  trying to understand and I’m using you as a way to process through them. Thank you for that gift.

Again, there’s no good end to this blog. It is what it is. I do not grieve for myself–I have full confidence that I’m off to bigger and better things with the man upstairs. But I grieve painfully for and with my family. This sucks. And while we all knew that this would/could be a part of our story…I don’t think we could have ever imagined what it actually feels like to be here in this moment…and it…well…it’s no good. Keep my family in your thoughts and prayers.

 

* Much of this paragraph comes from Jess and my assessment. The doctor’s simple response was that time was very short and as an extension of that she adamantly said that we needed to move our family Disneyland trip up from June to…as soon as possible.