Tag Archives: Cancer

The Fourth Act

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I’m totally over this whole cancer thing. I mean, seriously–it’s so 2011 ya know? I miss seeing my downtown crew, the group of people that never make it into a schedule because you happen to run into them whenever you’re around town. The problem is that I’m never around town anymore. Things in my body have changed so drastically over the last few days, weeks, and months that my presence in my downtown neighborhoods has dwindled to nothing…and it’s killing me (not literally folks…at least I don’t think so!). I absolutely hate it for more than just a few reasons. But…it’s just a part of the story that I can’t seem to get away from these days.

Speaking of an inescapable story, let me quickly give you a summary as to where my body is right now. Headaches have become normal. We don’t know what is causing them, but I tend to wake up with a throbbing type of headache that comes and goes throughout the day. It’s manageable, it’s not debilitating, but it’s there.* Then there are those times where the headaches get out of control. They (the out of control ones) seem to come about every 1.5 to 2 weeks and they always draw me back to the ER (they always seem to happen on the weekends too!). The problem is that when the headaches get too bad they induce vomiting which keeps me from being able to effectively manage the pain on my own. Anyway, so weekend trips to the hospital have sadly become routine around here as have the debilitating headaches. Not the routine we’ve been hoping for!

Simultaneously my ability to walk is getting worse and worse as my right leg has become less functional. This has a greater impact than I can write about here; it deserves a whole blog unto itself. Living in a three story house and being a guy who hates to sit still in his own home this has caused not only great identity crisis but also is creating more physical pain as I refuse to slow down my life in accordance to what my body is telling me I’m able to do. My body is screaming at me to slow down, but my heart/mind/spirit/arrogance is refusing. So what ends up happening is that I crash at different moments into a puddle of exhaustion and my wife is left picking up the pieces.** Showering is exhausting, tucking my kids into bed wears me out, standing while doing the dishes leaves me sweating, essentially anything that defines home life wears me out and leaves me huffing and puffing. Sadly, my favorite pastime: reading, is a freedom that I don’t have as much anymore due to my medically induced narcolepsy! Anytime I sit down to read I end up falling asleep! it drives me absolutely crazy and is one more thing that I can no longer do!

Anyway, this blog was not intended to be a whining blog…though I think whining occasionally is perfectly OK. My intention, however, was to say some of that simply because I want you all to know where I am at right now. MRI results will be in this week and we’ll find out if the headaches are due to tumor growth or something else. The results will give us one more small piece to the puzzle, but as I think I’ve shared before, MRI results only mean so much. We’ve come to rely less on these results because they can be so fleeting in their significance. Due to the volatile state of my type of tumor, what a scan says today could be completely opposite of what it says in four weeks! Regardless, I’ve said enough concerning where things are at. Due to some of the above factors (and a few others I haven’t written about here) my life is once again filled with sick moments, regular doctors visits, and now new visits with specialists of all sorts and sizes. Or, in other words, my life has not created enough time for me to be with you or to have quality time with my wife as I would prefer.

My fear and greatest burden right now is missing out. I’m missing out on all the fun. I’m missing out ’cause I’m just too tired to participate fully. I’m missing out ’cause I’m codependent with transportation. I’m missing out ’cause I don’t have time due to all my doctor’s appointments. I’m missing out ’cause I’m sick as a dog. I’m missing out and I don’t like it. But it is, weather I like it or not, a part of my story right now. It just is. It’s that part in the middle of the movie that’s not very good, the part that you endure ’cause you’re hoping (assuming?) that it is building up to some kind of more interesting and fun-to-watch part of the movie that should be following it. It’s not a lull but a building crescendo right? Please tell me I’m crescendo-ing right now ’cause otherwise this is just plain ol’ boring and I’m kind of done with this scene.

If Act One of my movie was all about discovery and initial recovery; Act Two was about trying to figure out what life looks like as the cancer boy; Act Three was the lull of digression (what this blog has been about); at some point Act Four must begin and it should be an act marked by life giving activity, by healing, by community, and by refreshment. Right? What will act four be?

The hope, then, is that this movie is shelved in the feelgood section and not in the drama or tragedy section of the stockroom. Right?

How about this: Lets just go out there and make a good movie okay?

 

* I know there’s lots of good ideas for what to do to get rid of these or to manage these–so please know that we are and have been exploring options. I appreciate your concern and your creativity in sharing different ways of treating this stuff, but I really do have an amazing support structure around me that is always pursuing new ideas and options. So don’t worry!

 

** Another whole blog needs to be written about my wife’s role in all of this! Shesh, I’m not sure who has it worse to be honest. She does so much and receives so little praise or recognition for what she’s constantly having to give up. She is amazing-a thousand times over amazing- and she makes so much of my life possible through her hard work and constant sacrifice.

 

Caleb’s Prayer

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Two years ago I was invited to be the keynote speaker at a high school camp over Labor Day weekend. Mind you, this was pre-cancer, this was at a time when the content had nothing to do with my story in particular and had everything to do with being just a plain ol’ dude with (possibly) something to say about Jesus.

As an intro into each of my messages I invited the teens to pray with me in unique ways that I thought would allow us to engage the particular Jesus topic we were about to encounter. So, for example, when I shared stories that captured the side of Jesus that reminds us how he fights on our behalf I invited the kids to rub their hands together and then open them up as if receiving a gift. We took this prayer posture while we then invited the God who gives, cares, and sacrifices on our behalf to be more present in our lives. I thought it was a cool experience…I new knew if it connected on any level with anyone else…and it didn’t necessarily matter I guess.

Anyway, two years later, we decided to visit up at camp for the day. As we were there (this was last week) ten year old Caleb asked if we could pray this same way on my behalf. It must be noted that Caleb was only eight when I invited the camp to pray this way two years ago, and it must be also noted that he’s way too young for this camp in the first place! Oh, and it should probably also be said (though we all already know this) that none of us ever remember what a teacher, preacher, or speaker of any kind said twenty minutes ago let alone two years ago! What the?! And yet here we find Caleb not only remembering but wanting to engage in it right here, right now, at this very moment! Caleb approached the directors of the camp and asked if the entire Faith Quest (the name of the camp) community could pray over me in this way–“in the way that Ryan taught us to pray a few years ago.” I’ll say it again, what the heezy?! What the hizflip? What the what!?

So twenty minutes later I found myself with my wife, my parents, one of my sisters, and my uncle being prayed over in front of 500 people, lead by one boy: Caleb.

It was needed prayer too.* I had just spent the entire prior day sick and in the ER. Heading out to the camp for the day was a risky move, one that we were lucky enough to not have backfire on us because you just never know from moment to moment how my body will respond and feel. We stepped out on a limb driving out there and it did not come without cost–but it also came with great blessing. And the greatest of those blessings was Caleb’s faith. It was his prayer. It was the prayer of the FQ community initiated by this one boy.

Honestly I cannot tell you what he said in his prayer. I’m not sure it matters too much. There’s this idea in Scripture that the Spirit of God groans on our behalf, that even when we don’t have the words or when we’re saying goofy words, the Spirit of God is speaking for us and speaking in the silence and even speaking through our gibberish. Caleb prayed as a person of faith, he prayed with humility, he prayed with passion, and he definitely prayed with courage. It was beautiful to see, it was beautiful to be carried by his words, and I hope that all the high schoolers who were out there that weekend learned something from him. I remember being in high school. High schoolers can be a dense group of people. Or. OR they can be a cloud of people who are able to be touched by such moments as these. My hope is that they were. My hope is that they saw Caleb’s faith and were invited to step up to the challenge of belief, hope, and prayer. I know I felt challenged and invited.

Thanks Caleb!

Oh, and the greatest thing about all of this was the giant hug that Caleb gave me afterwards. For a kid that isn’t the biggest of them all, his hug was huge! Somehow his small stature engulfed my bloated body up on stage has he gave me a massive bear hug that far exceeded his frames potential. It was just one of those moments that sticks with you.

 

* Prayer is obviously always needed. But in this particular moment there was a stronger felt need for sure.

A Blog That’s Not About Life Insurance

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I’ve written about some awkward things. I’ve intentionally made the decision at different points to share with the general public things that most people keep under wraps. I’ve done this because I think it is valuable, because I think there’s a lack of important information out there that could free many people if only they had access to it. So because of this you’re familiar with how I catheterize, I’ve shared about sex, about the deterioration of my body, about the effects of steroids, and even some strangely not often shared info about MRI scans.

Well today I’d love to share some stuff with you that makes me feel even more awkward than any of those topics ever did. I want to share some private stuff with you about life insurance. The reason it makes me feel awkward is because I don’t want it to come off as me patting Jess and I on the back, because the reality is that we were just blessed to be given good advice at a young age and we were just foolish enough to take it. My hope is that I can share a bit of this part of our story and it will invite you into, what I believe, is a really exciting way to live (and die).

Let me also say quickly that I’m not a money guy. I couldn’t tell you much about interest rates, investment opportunities, or anything like that. It’s not my world and I won’t even attempt to fake it. If you want to message me about better life insurance options or something of that nature…please don’t. What I can say is that at a very early age (I think I was 22 and Jess was 21) when we found out we were having a child we chose to get term life insurance for both of us. Because we were young and both very healthy it was an incredibly cheap route to get half a million bucks for each of us if we died. The amazing thing is not that we got life insurance at a young age, but that we kept it all these years. To be completely upfront, we’ve always been poor. We’ve grown very comfortable not having much money and it’s turned into a way of life that we are ok with. It has allowed us to engage in the work that we want to do (church planting) because we’ve been able to work for virtually nothing (or at times, literally nothing). It’s freed our imaginations to create what has now developed into Grassroots Conspiracy because money was not much of a factor/inhibitor in its creation. So the amazing thing isn’t that we got it but that we continued to pay it all these years! (thank God that we did right?!)

Some credit needs to be shared with Dave Ramsey and his Financial Peace University class. If you’re not familiar yet with Dave and what they’re all about…get familiar. FPU was huge in challenging us to live in a way that allowed this reality to exist, it gave us the tools to live off little, it provided the inspiration to buckle down, and…well…it’s just good stuff!

But this blog IS NOT about you getting insurance (though if you don’t have it, you need to…especially if you have kids. It’s too cheap not to). What I really want to share with you is to ask what you’re going to do with your life insurance money. I never really though I’d have to answer that question, but in reality we all will at some point. Most people view that money as their own, they view it as their way to care for their own. And it is. And it should be. But if you buy into the idea that money, stuff, and all that jazz are temporary. If you buy into that crazy idea that stuff (even the good stuff) will eventually rot, that you can’t take any of it with you, and that stuff is here to serve you and not the other way around–then I’d suggest you really question how your life insurance is not only practically used but realistically viewed.

View it as a gift. View it as an opportunity. View it as a chance to make a difference, to leave a legacy, and to partner with those you love in seeing the world be transformed into its original purpose and intended beauty. Money is not evil (as some people mistakenly believe), money is an opportunity–one that shouldn’t be missed out on! One of the ancient practices of the Christian faith that I love is one of generosity. Jesus invites his followers to give up everything, but as a framework, as something to hold onto Christians use the term “tithe”. Tithing is a concept continued from Judaism (of which Christianity is a part) and it essentially means that you give away ten percent of what comes in to God. What would happen if people started giving away ten percent of their life insurance monies to just causes, to care for orphans and widows, to build wells, or to support non-profits among other things? Yes that money is intended to care for your loved ones when you’re gone, but there’s more than just financial support that needs to be thought about! When you invite your children to prioritize giving away a piece of what you have to care for others you are teaching them something that cannot be caught from you in any other way. Outside of practicing it they will never learn generosity from you unless you are generous! It just doesn’t work any other way. In inviting your family to be a part of tithing off your life insurance you are inviting them to a holistic worldview that is larger than themselves and will shape them in incredible ways (not to mention shaping yourself). Talk about caring for your family right?

For a poor kid* it makes me giddy to think about being able to intentionally give away $50,000. I mean, seriously, what poor kid gets to do that? What a gift!? What an experience?! How much fun would it be for you and your spouse or you and your whole family to sit down and dream about how, who, and where you could give money like that? What services are you passionate about? What families do you know that could be blessed by that? What causes need championing? You’ve now got resources to dream with? Your imagination can run wild all because you ponied up $25 a month for life insurance!

So this post isn’t really about life insurance as much as it is about learning to give, to leave a legacy, and seeing beauty emerge in our world in more and more ways. It’s an opportunity that I hope none of us miss out on!

 

* OK, poverty is so incredibly relative. Geez, I use the term very loosely here and am mostly using it for affect than anything else. I do not feel poor and have never really embraced that term because relative to the rest of the world I’m in the top couple percent I believe.

Musings on being a bad inspector…and a quick update

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This is the third time it’s happened in a little over a month. Every two weeks seems to be the rate. In literally an instant* I can go from feeling great to being admitted to the ER. Each time I’ve ended up in the ER it’s happened because my body has turned on me in about one to two hours. I’ll go from having lots of energy (please don’t forget it’s all relative!) and feeling really well to having an unmanageable debilitating headache, vomiting, and all those fun aches that go along with feeling sick. And strangely enough it only happens on the weekend where our only recourse is the dreaded hospital! Fun times. (fun times especially when a weekend ER visit usually necessitates canceling our Sunday community meal. Boo)

It’s the same routine every time we go there too. They very quickly get me my own room in the back so as to protect me and my low immune system from all the germs/bacteria/etc. Then we wait and wait for the specialized people to come and “access my port” or in other words to get my IV hooked up to my chest. This usually takes longer than it should, upwards of an hour most nights. Once the port is accessed they get me lots of fluids, anti-nausea meds, and begin the pain killer dance. Eventually they get me a CT scan, have me cath so they can test for a UTI, and then try to kick me out before my headache is gone.

In the end there’s never a legit reason as to why I get so sick so quickly. Is it from all the different meds I’m on? Maybe. Dehydration? Probably. Jacked up nerves? Always. Tense muscles? Most likely. UTI? At times. Flu? Maybe. In the end I go home and at times feel completely better by the very next day. Other times it takes days to recover.

Jesus once cautioned us to “[not] worry about tomorrow for tomorrow will worry about itself. Each day has enough trouble of its own.” I like and hate that. It’s a statement that’s more true than I’d ever want to believe; it’s a statement that used to sound comforting but today feels more dangerous than anything else. It feels dangerous because I’m seeing how true it really is, no matter what happens today I have absolutely no idea what tomorrow may bring. The fact that it worries me more than brings me comfort shows the reality of where I’m at right now emotionally and physically–because those words warn me that no matter how good I feel today tomorrow may bring incredible sickness! In my more optimistic moments (not to invalidate either side-the optimistic one and the pessimistic both have a place in the grief process!) this might bring more encouragement because it helps me remember that no matter how bad I feel today tomorrow could be better.

Regardless, here I sit. Sitting in that tension. Luckily I sit with an amazing supporting cast of my wife and kids. Jess has never left my side in all of this and continues to be an overwhelmingly beautiful support in all of this. If it weren’t for her do you realize how confused I’d be? I’d be like Inspector Gadget without the cool gadgets. I’d just be a bad inspector.

 

* I’m using the phrase “literally an instant” more metaphorically for “really quick”

Are You Dying?

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Back a few months ago, on the day of our Roast and Toast we spent the entire day with some new friends. They flew up here from sunny Los Angeles with their cameras, lights, microphones, and the whole setup required for filming (ok, much of the equipment and some of the crew were brought in from Portland) and their purpose was to capture my story.

You might be familiar with the website Soul Pancake. It is a very popular site dedicated to creating valuable dialog. They artfully walk the line between the serious and comical (something I find greatly valuable!) and they do it well. One of the projects that they’re working on is something called “My Last Days“. The purpose is to both inspire and to create honest dialog about what it means to die. Their method is to do mini 7-10 minute documentaries following different individuals who are potentially living out their last days. While my hope and desire is to live out my last days in about forty to fifty years, my health has sadly invited me to live the last year as if it is my last. And although I am not completely certain how Soul Pancake came across my story, I am grateful that they did.

In about three weeks they will be rolling out their first installment of My Last Days and it will be featuring me, my family, and some of you who attended the Roast and Toast. I’ve seen the rough draft and I can tell you that it is high quality work, it’s powerful stuff, and they make a very strong effort to create a documentary that is not manipulative but is honest about the story being told. In other words, I am proud to have my name and my story associated with this project and I think that you will be blessed by what they’re attempting to create.

So What?

Here’s where I’m going with all this…do you or someone you know need to have your story told? Would you mind nominating someone whose story needs to be shared, whose life is one that needs to be remembered, whose way of dying is inspiring–inspiring not in a fantastic way but in a willingness to engage in the reality of death simply and honestly? It doesn’t require a polished and pretty view of death (preferably not!), it doesn’t require that you’re ok with dying, it doesn’t demand that you’re in a happy place, it doesn’t necessitate that you’re in a good or bad place physically right now. All it requires is a willingness to open yourself up, to share your story (whatever story that may be), and to let your story then be shared with the greater world.

This is an amazing opportunity and its one that I believe can have a major impact in our world. If you’re willing to be interviewed or nominate someone else please contact Justin, the producer of the project, here: mylastdays(at)soulpancake.com or message me at ryan@gr-c.org

I really think it’ll be worth your while*

 

*  As a side note, that’s a really strange expression. Worth your while? Huh.