My Story in 800 Words

I was invited to share my story through a developing website called Stories of Sifted which is an extension of the Exponential Conference. It was a great exercise for me to attempt to capture my story in 800ish words. I’ve included it below…

My story of sifting is neither tidy nor complete. As I write this, everything is still unresolved and messy, as we wait daily to receive test results telling me if I’m closer to dying or to further living.

In May of 2011, shortly before my 29th birthday, we discovered that the strange limp that had developed in my right leg was in fact caused by a stage four cancerous tumor in the middle of my spine separating my spinal cord in two. Prior to this discovery I had never been admitted into the hospital, never made an emergency room visit for myself, never had an IV, never broken a bone, nothing. As a young, active, healthy, organic-eating, almost vegetarian who recycles and prays, this was absolutely unexpected. Two months prior I had been sent by my previous church to downtown Vancouver, Washington, to plant their daughter church, three weeks prior I had finished my graduate degree (the last hurdle before fully delving into being a lead church planter), and three days prior I had just returned from taking my wife and kids to Disneyland.

On May 31st I went in for surgery—at the time the doctors were confident that it was a benign self-encapsulated tumor, but by the time I emerged from surgery the doctors revealed that while they still believed it to be benign it was in fact completely entangled in my spinal tissue and they could not remove all of it. Additionally I woke up from surgery paralyzed from the abdomen down. The next two weeks in the hospital were a whirlwind of ups and downs as my body healed from the surgery, as I began the long process of re-learning to walk, as I had to learn how dress myself again, put on shoes without being able to life my legs, as my wife had to learn to give me shots, and as we waited tenuously for official pathology results. As I stated in the beginning, contrary to doctors original assessment the tumor was not benign and was in fact a high level incurable tumor known as an Glioblastoma Astrocytoma. At the age of 28, I was given a short shelf life.

Once I was back home from the hospital we began the next stage of the journey which included extensive work with a naturopath, radiation treatments, and oral chemotherapy. Routine MRI’s would show over this time period that neither the initial six weeks of daily radiation nor the chemo would have any affect on the tumor—and in fact the tumor appeared to be growing (though few new physical symptoms emerged). There were all the usual physical obstacles along the way: back pain, infections, blood clotting, and a pulmonary embolism. Today I am on a regimen of stronger chemotherapy pills that I take for five days every month leaving me sick for about two weeks at a time.

The most mysterious thing throughout this entire journey has been the manner in which God’s story has been told. God has not promised me another day, I do not believe he has promised healing (though I do believe he can bring it!), but he has made an audacious claim to restore beauty for ashes, to give joy instead of sorrow, praise over despair—he has promised to tell a beautiful and redeeming story in our life and our death. And that is exactly what I have experienced him doing. The timing of my sickness was such that it seemed to interrupt our work of initiating a new gospel movement in downtown Vancouver that we are calling the Grassroots Conspiracy. But the reality that we have had to deal with is that the gospel movement has not been interrupted, rather it has been given a new canvas for fresh interpretation. Our ministry here is almost exclusively focused on those who are very far from faith, who have never set foot in church, and who find the usual rhythms of church practice foreign to their lives but what God has been doing through my sickness is to create a portrait of the gospel that is drawing new people to him. Fighting cancer has not stopped our church planting it has transformed it! This is not an interruption to the story; it is the story! So whether the gospel story is revealed in my neighborhood through my death or through my miraculous recovery what we are learning is that God’s grace is extended through his ability to redeem every moment, every sickness, every interruption and make it a mirror of love to the world. The question is: will we allow God to enter into our story and thus transform our sifting into something beautiful?

Chemo Round Two

(that’s not my spine…but it’s the closest I could find that replicated my images. I hope it helps give a bit of context)

Today we received both good news and bad news. Here’s the good news:

  • My brain, lower back, and upper back are clean and tumor free. The squiggles are nothing to be worried about and it appears as though there’s absolutely no reason to worry that my cancer has metastasized to any other part of my central nervous system.
  • Symptomatically my body is showing very little signs of unhealth. My body continues to improve (these days I don’t even us my crutch to get around!), my mobility is getting better, my energy level continues to grow, and my brain continues (as it’s always been…right?) sharp as a tack.
  • We have a plan of attack for the upcoming year. After all the mystery over the last few months its nice, at the very least, to know what’s ahead of us once again.

The bad news is that it appears as though the tumor in my spinal cord has grown. While there’s been no new growth anywhere else, the growth of the original tumor itself is quite clear. All along the oncologist has made it clear that it was very possible that my post-radiation MRI could look worse due to radiation damage, scar tissue, etc. And while this is still true and a possibility, the scans seem to show pretty unmistakably tumor-like growth. Additionally, as a board of oncologists, radiologists, neuroscientists, surgeons, pathologists, and others gathered around my info this morning (prior to my appointment with my oncologist) the pathologist who originally gave me the GBM (level IV cancer) diagnosis made a strong recommendation to bring that cancer back to the table. There was additional info that led her to believe that there might be a ‘chunk’ or small tiny piece of level four cancer in there that shouldn’t be ignored.

The overwhelming and unanimous decision of the board was to move forward as if it was a higher level cancer because the risk/reward was much in my favor to do so. Their recommendation then was that I take chemotherapy medicine for the next year. What this looks like is that every four weeks for one year I would take oral chemo pills for five days. The expectation is that I will be more tired during those five days and for maybe a week following. Unlike when I was on chemo previously I will not be undergoing radiation treatments, I will not be recovering from major surgery, and (hopefully) won’t be recovering from blood clots and a pulmonary embolism. So it shouldn’t lay me flat like the previous series did!

In a sense I came away from this morning feeling somewhat hopeful. It felt good to know that my brain was clean. It felt good to know what to expect for the future. It felt good to anticipate a series of treatments that seems doable (it doesn’t sound overwhelming to take pills five days a month and be tired for ten).

In reality, however, few of the things listed above should make me feel good or hopeful. The reality is that while the cancer hasn’t appeared anywhere else, the fact that it’s growing communicates that we are indeed dealing with an aggressive form of cancer…not good. What SHOULD bring hope and make me feel good is that, as always, my life (and yours) is about so much more than simply extending life but about truly experiencing it! It’s about making something of it, about living something beautiful, and about leaving a legacy. I wish Jesus would use his Jesus-powers and magically zap this stuff out of here…but that’s not the story I’ve been invited to tell…

 

…yet??