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admin

About admin

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.

Causality or Conspiracy

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It’s funny how one of the first places we all went when the tumor stuff started was cause. Why in the world would a tumor pop up in the middle of my spinal cord in the middle of my back? (clearly and soberly the hope is that it didn’t metastasize from some other place. If this ends up being true then the jokes just aren’t quite as funny! Which makes me want to write this blog sooner than later! Ah!) I’ve been joking about how I never should have started taping my cell phone to my back as I walked around. Damn celular radiation! Then we had some who have questioned the 1920’s community home that we live in. Are we living in a mold-infested and toxic laden home that is causing both my son and I to have negative and surprising health concerns?! We’re all trying to figure out the why question and so I’ve decided to make a list of some of the things that changed 4-5 months ago. These things are potentially directly correlated to the emergence of the tumor in my spine and Jones’ swollen lymph nodes and must be treated as so:
  1. Valentines Day. Could our over consumption of chocolate and excessive euphoria due to the mad card making we did for my wife really have caused something like this? Timing would say yes!
  2. Obio the cat. Ok, so maybe we already had Obio at this point…but I feel like I started being annoyed at the way he used his kitty litter right about this time period. This was a major change and cannot be ruled out.
  3. That one dude. You remember who you are. I met you at the pub, we talked about gardening and chickens and such. You had brown hair, drank some local brew…I feel bad but our meeting just so happens to coincide and I cannot rule you out ’cause I think at one point you brushed up against my back.
  4. Ikea Rug. This ones it. We bought that grey flowery rug at Ikea and put it right upstairs in our bedroom where I sleep! Correlation made and confirmed!
  5. Costco membership. I knew there’s just too much good stuff at Costco, too many free samples, too many flashlights in one package…too much to not make a connection to the fact that we started shopping at Costco again at the beginning of this year. Coincidence? Only my surgeon can say.
  6. Christmas. So maybe I’m stretching back a little too far here, but there is a chance that Christmas did this to me. Christmas brings with it all sorts of alternative and new experiences. Eggnog, yule logs, bearded men in chimneys…
  7. North Carolina. I should have never gone to North Carolina! Spending time with JWH and the Rutba people, watching Durham literally shut down after an inch of snow, and sitting in a classroom under the tutelage of my professors must have done something to my body that was irreparable!
  8. Exercise. I think I remember trying to actually exercise at the beginning of the year. I’m a little fuzzy on the details right now but if my memory serves me correctly I tried to exercise and even that attempt may have given me a tumor. Important note to self: for the sake of my family do not go running, weight lifting, or use any elliptical machine.

Changing gears and speaking a big more seriously I am not one to look for causes. I am not one to seek out justification, to try to figure out how God has “willed” something like this to happen. My five year old son seems to share my perspective because the night before my surgery I sat down with my son and tried to have a special conversation with him regarding “daddy’s big day”.

Jones: “daddy, it’s not that big of a deal”

Me: “You don’t think so?”

Jones: “People all over the world have tumors right now”

Me: “I guess you’re right. I guess this is something new to our family but it’s actually pretty normal on a global perspective huh?”

Jones: “Yeah. And many of those people are dying from them.”

Me: “Dying? I like to think that many people are finding new life as those tumors are removed from  their bodies!”

Jones: “What about people in Africa who do not have access to adequate medical facilities or doctors?”

Me: “Wow, you’re right. I guess we should feel really lucky and special that we live in a place where we have such good doctors huh?”

Jones: “Yeah. Can I have another pillow I’m ready for bed.”

Me: “Sure. Goodnight.”

Talk about perspective right?! Stuff happens and we don’t know why. Sometimes we’re blessed to find a cause and sometimes we are not. In my case…and I may look foolish in saying so I just can’t help but marvel at the timing of it all. The week I finished grad school and entered into what was supposed to be a two week sabbatical period was when the painful symptoms emerged. Then week following my two week sabbatical was the moment I had been counting down to when my time was completely 100% freed to do what I had been working toward doing for four years–namely giving myself completely to the work of creating the Grassroots Conspiracy in the downtown community. Instead on that first “free” Monday I was on my back for eight hours in MRI machines. Timing wise nothing was going according to plan, my eagerness to enter into new activity kept getting interrupted by all this health stuff! A good friend of mine and someone I respect deeply reflected that it

Seems like health issues come in waves, especially when…on the cusp of some strategic ministry breakthrough.

Essentially it seems like when big things are about to happen big things tend to happen (I’m quite the writer eh?) The irony beauty of all this is that instead of ME trying to work and create something in our community, everything has been turned around. I’ve been thrust into the test tube of our own dreaming. We sought out to create a community of people who are learning to buy into the Jesus way of dying to self and living for others and rather than having space and energy to live it out myself I am being forced to be the guinea pig. At first I hated it, it embarrassed me to be the recipient of all of your love. Today it still embarrasses me and continuously freaks me out as my family is showered with the love, care, and selflessness of an entire community! I’m supposed to be caring for you! I’m supposed to be doing this, I’m supposed to be coordinating meals for MY neighbors, I’m supposed to be helping YOU. Oh the irony beauty of it all. You all are amazing. Whether you like it or not you are living out the Christian narrative. Isaiah 61 captures the backwards nature of it all–broken people are bound up, mourning is turned into joy, justice if found, beauty instead of ashes–everything is turned around made backwards and beauty emerges. Love it.

1 The Spirit of the Sovereign LORD is on me,
because the LORD has anointed me
to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
to proclaim freedom for the captives
and release from darkness for the prisoners,
2 to proclaim the year of the LORD’s favor
and the day of vengeance of our God,
to comfort all who mourn,
3 and provide for those who grieve in Zion—
to bestow on them a crown of beauty
instead of ashes,
the oil of joy
instead of mourning,
and a garment of praise
instead of a spirit of despair.

and its happening before my very eyes…

Like Jones said, “tumors happen”. The real story here is that prayer, love, and sacrifice that has been given to my family because of you all does not “just happen”. You people are co-conspirators of the greatest kind.

Test Results

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There’s no good way to go about starting this blog post.

We talked with our surgeon late Wednesday night and he said that the makeup of the astrocytoma cells in my spine are not the low level ones they anticipated and because of the strange ways that they’re acting they have sent them to the Mayo Clinic for further research. Because of this we will not have further information regarding what lies ahead of us regarding treatment for probably another seven days. Essentially what this means is that unlike previously thought we are actually dealing with cancer though we do not know to what extent nor do we know how severe.

Please pray with us and our family as we sit and wait this week for the complete pathology report and please be aware that until we know our treatment options and have determined a course of action we are not telling Jones and India of this development.

I can honestly say that we are moving forward with great hope and confidence as we tackle this next stage in our journey. The ridiculous number of people who have rallied around us over the last month and the ways in which we have found hope in Jesus’ promises and movement in our lives during this first stage leave us with no other place to stand than with hope and confidence. While everything at this point is still unknown regarding future treatment and specific test results, everything that has happened in the last ten days has me moving forward with a genuine sense of peace. This all sucks but like my four year old—now much more meaningful—tattoo repeats from Scripture, God is in the business of bringing “beauty for ashes”

So please spend the next week in constant prayer with us as we wait for details. We love you all!

Singing Anesthesia

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No words to post today, but I do feel as though I need to share this video with you. This was the song I came out of anesthesia singing. No joke. I couldn’t stop singing THIS song (and two others: “here we come a wastling” and a Portuguese worship song).

The Official Update and Report

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From the very beginning of our recent medical journey everything has (in strange ways) changed and moved so quickly. From my original symptom of noticing my ‘drop foot’ while walking downtown, to discovering the results of the MRI, to developing additional symptoms, having the actual surgery, and now the daily recovery process every single moment has changed and morphed reality as we are experiencing it.

So let me do my best to update you with where things are and where they are progressing. The best way I can do this is to first give a quick run down of links to the former stories that might help to contextualize:

Surgery was on Tuesday and I spent that night and the entire next day in ICU for recovery. While I went into surgery with pain, swelling, and some major numbness in my chest, back, and abdomen (the symptoms morphed incredibly over the 10 days leading into the surgery) I came out of the surgery with partial paralysis from my abdomen down through my right leg. My left leg came out of surgery with numbness but in pretty good functioning order and I clearly had back pains and issues due to the surgery itself.

While in ICU I was virtually immobile. I had to have help moving my body in bed, repositioning it for sleep, comfort, etc. Essentially I was pretty helpless–though honestly in great spirits. My great spirits were due to the fact that from the very get go my body was recovering amazingly from the surgery. My breathing, eating, pain level, back scar, and any other general vitals were consistently and shockingly ahead of schedule…to the point that instead of eating ice chips I was consuming Pad Thai in the ICU (thank you friends!).

It was not until Wednesday evening that they finally moved us into the 7th floor suite where we would stay until Friday. It was frustrating to stay in the ICU so long because my children were not allowed into that space, and due to the timing of when they moved me I was not able to see my kids after the surgery until Thursday morning! Being on the 7th floor was wonderful, it was a giant bright room, we set up shop with flowers and notes and all that jazz, and it became home ’till Friday.

If on Wednesday I was helpless and completely immobile due to paralysis and back pain, on Thursday I was free as a bird! Ok…I felt free as a bird…so at one point on Thursday with a walker, a physical therapist holding onto a belt around my waist, and my wife gliding next to me I was able to “walk” from my bedside to the hall way. Singing “Golden Ticket” and channeling my inner Grandpa Joe I walked. It was exciting and I was riding pretty high considering the fact that the day before I was completely immobile. At this point though I still couldn’t get into and out of bed without someone hoisting my leg for me. I was still relatively helpless and motionless, but to know that with help my body was able to do stuff was exhilarating…and so close to the surgery too! So on Thursday I learned that with help I could drag around my dead leg.

On Friday they moved me into the rehab clinic at the hospital. Honestly it was kind of a hard emotional move because not only was it a downgrade in rooms (that 7th floor is posh!) but it meant that I was no longer an invalid, I was no longer a hospital patient–I was in rehab. No IV drugs, no hospital gown, and no on demand movies. But what a move it was! I was wheeled into my new room at 2pm on Friday and by 4pm on Friday I had done about 1.5 hours of both occupational therapy and physical therapy!

Nothing has changed in my right side. My brain doesn’t really know where my right leg is, if I were to close my eyes and attempt to do leg lifts I couldn’t tell you if i were succeeding, I have to be cautious about hurting or burning my leg because I don’t realize its getting smashed or scratched (in my first ‘walking’ attempt Jess had to tell me I was physically standing onto of my right foot!) At the same time, and this is where it gets incredibly difficult to articulate the tactile sensation in my right leg is off the charts. If you bump into my leg wrong I get shots of electricity shooting into my body or if you rub your fingers down my leg I feel as though your stabbing me with needles. It’s a strange blend of hypersensitivity and paralysis that I just don’t get. All of those symptoms have been consistent since surgery without any change–but here’s the amazing thing: my nerves and my muscles are remembering how to do things! I don’t know where my leg is, but with each attempt and exercise my body is remembering where to put my leg so I can walk, lift it, and move it in a functional way. It comes in really small ways, but each day its coming a bit more. Today I walked up stairs with one hand rail. Today I walked around with one crutch all day (awkwardly, but successfully). I maneuver in and out of bed easily now that I have a growing ability to “flop” my leg more successfully into correct places. Each day I am gaining skills that are getting me home–today I shaved. Ok, I know that doesn’t sound like much, but at six feet four inches tall that sink is pretty low and I have to learn how to balance at a sink, be able to reach over and turn water on and off, I have to have everything in certain accesible ways, etc. in ordre to set myself up for success and not fall over due to my right side. Its fascinating and humbling all at once…but my body is getting it. I could go on and on about little details like this (getting on shoes and socks can be quite a challenge!) but the exciting thing is that while my paralysis hasn’t changed (yet) my muscles and my nerves and learning constantly every single day and every single day is bringing more and more success.

At this stage in therapy I still must be attended to at all times (if I dare try moving without supervision boy do I get in trouble), I am still on major pain meds, I am still hopped up on steroids, and we’re still daily trying to see which muscles can function. My body is freakish and grotesque feeling as things are still swollen and distended in places, as my blood thinner shots give me funky rashes every time, as the steroids create marks and spotting, I still wear grandma socks to keep blood clots from forming in my legs, and as I’ve still got random bruising and sores from the needles that monitored all the nerves in my body during surgery. But lets be honest, now that I don’t have a catheter bag strapped to my leg…i’m looking pretty good!

Tuesday is a HUGE…HUGE day, so please know these things that lie ahead of us and be praying with all you’ve got:

  • Jess and I with all the support staff here will determine when I get to go home
  • Jones and Jessica will be meeting at 10am with a surgeon in Portland to discuss his lymph nodes
  • My pathology reports are potentially available (between June 7th-10th)

Grace and peace to you all who were able to read this long update. What an adventure and what a blessing to be able to go through this with all of you by our side.

 

Why YOU are Killing Me

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In the 4West rehab unit here in the MoJo wing at Southwest Washington Medical Center Sunday’s are our day off. No scheduled therapy sessions on Sunday, its the chill day. Its the day of rest.

Or is it?

By the end of today I was beat, I was beat to a pulp and tired and exhausted and…tired. Did I mention how tired I was? So I didn’t do any formal physical therapy today but I was blessed to live into the world that I love. My good friend Kevin brought Stumptown coffee at nine this morning and we an amazing morning together…and from that point on each hour brought a new friend (or two or three or six) to spend time with. Ranging from our downtown crew, to my children, to old family friends we were blessed with love from nine to nine today. Near the end of it I crawled (or was hoisted) into bed and told our friends that I might just sleep while they all talked…but I couldn’t stop! I can’t stop talking to any of you (that’s what I’m doing right now at 3am isn’t?!) because it’s what I love! I love you all, I love talking with you, I love hearing your stories and making you hear mine!

Much of the conversation today was directed toward the simple fact that I’ve decided that it is literally completely impossible to go through the process of rehab and recovery with negativity if you are surrounded and supported as we are and have been.* You all are changing everything because you have been so present physically, emotionally, spiritually, and any other -ally that might arise. How can I not feel hopeful about my bodies future with so much support and encouragement around me? So while I’m beat from talking so much on my “day off” I wouldn’t have it any other way. Thank you to each and every person who has visited, who has called, who has emailed, who has texted, who has facebooked, who has stalked the blog, who has messaged my parents, who waited in the waiting room, who prayed over us the night before, who stopped by the house leading up to the surgery, and those who are praying and waiting eagerly to jump in once we talk to a surgeon on Tuesday (the 7th) concerning Jones’ lymphs. You are all a part of this and I loved spending twelve hours today with a collection of you. You wear me out…but based on Jurgen’s face when he left tonight I’m pretty sure my catheter stories kind of wear you out too.

Love and peace to you all.

 

* As I type this I realize some of the foolishness of my statement. If my body were regressing right now, if I were getting infections or other major set backs I realize that things would be different…and this genuine realization is kind of sobering actually ’cause it it shows how much more valuable this emotional and spiritual support is especially if/when the setbacks come!