An Update: Chemo, Drugs, MRI’s, CT Scans, and Feeling Better

(I’m sorry, this photo has nothing to do with my post…but I stumbled across it and it’s absolutely awesome. Couldn’t pass up including it)

Well the last week wasn’t too bad now was it? I just finished my fourth round five days on 28 days off chemo treatments and it went swimmingly well (all things considered). It has been a strange month following my previous miserable bout of chemo, back pain, infection, etc. Physically I’ve felt really well (the best I’ve felt in a while), I’ve had pretty good energy, and only the expected amount of back and leg pain. Of course I still feel like I’ve been missing out on life in incredible ways as it’s been the holiday season, back to school season, my sister and her family have been in town, and there’s just been some important catchup with the fam to focus on. Tomorrow or the next day should be my last days feeling the effects of my last set of chemo pills and, like I said, it’s been a great round. I had headaches, body aches, sleepiness, and some weird hot flash kind of stuff but at no point was I down for the count. At no point was I miserable beyond belief. At virtually no point was I unable to fake that I felt fine (insert winking emoticon here).

On Monday I went in for a head to tail MRI session. It was a little sooner than I had anticipated having it done considering it was only a month ago that I had an emergency MRI done on my tumor. But it’s good to get another session out of the way and in about two weeks I’ll meet with my oncologist to discover that it probably won’t tell us much more than what we already know! (lets be realistic here huh?)

I’m looking forward to scheduling a CAT scan sometime in the next two weeks to confirm that my lungs have recovered from the pulmonary embolism from six months ago. If they have recovered (and all signs point to the fact that they have) then I can get off these nasty blood thinners once and for all! It’ll be one more gnarly drug that my body can be free of as it seeks to function in a healthy, holistic, and eventually cancer free (positive thinking right?) way.

So there’s the update. Thank you everyone for your love and concern.

peace.

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?

Amulets and Charms

I’m not a superstitious guy whatsoever. I’ve never had a lucky pair of socks, I’ve never had  a lucky number, I’ve never avoided a black cat. I see the world to practically to be much in to superstitions and I’m probably too laid back to spend much time thinking about them anyway!

But if you looked in my pocket these days, if you glanced around my bedroom, or rifled through my closet you might think otherwise…and maybe for good reason.

Every day I put two things in my pocket:

  • A coin that my sister-in-law purchased for me at the Grotto from the patron saint of cancer patients, Saint Perigrine. The coin says that cancer “Cannot defeat the soul, cannot shatter hope, cannot depress faith, cannot destroy homes, cannot limit humanity, cannot kill friendships, cannot silence courage, cannot ruin the soul, cannot reduce the spirit, CAN be overcome…” I’m not Catholic nor do I pray to saints but I do value what it represents. It represents hope, it represents God’s power to heal, and it was a gift from someone I love. As I walk around with my hand in my pocket I usually flip that coin round and round between my fingers and am reminded that cancer CAN be overcome. I love what that coin represents. I need to be reminded of that.
  • A shard of kyanite stone. To be perfectly honest I grew up believing that crystals were evil, that they somehow represented a satanic power or something. A word like “energy” would have never been used with regard to healing (nor did we speak of ‘holistic healing’ of any kind). Today I find myself fascinated by the mystery of how God has fashioned our bodies into being, how much depth there is beyond the tangibly physical and how much reality there is to our ‘energy’ as individuals and as a community. Anyway, a friend suggested that I carry around this stone, that it aids in bringing energy balance and healing. Honestly I don’t know if that’s true or not. It would make sense to me that like food provides healing for the body, or like how animals often provide comfort for the emotions, other parts of God’s creation would also bring with them additional properties of value. Regardless I carry around this stone in my pocket not because I think it’ll do a magic trick in my pocket but because it reminds me that God CAN bring about healing and he HAS created a world that was intended to function a certain way that nurtures health and vitality. Granted I am a constant reminder of how broken God’s intended reality has become…but as I rub that stone in my pocket I am reminded not of my brokenness but of God’s ability to bring about healing. I like that. I need that. I want that.

If you looked around my room or closet you’d stumble across a few things too:

  • Draped across the chair in our room is a prayer shawl made for my wife by my aunts and my grandma. Hand knit by a group of loving women, anointed with symbolic frankincense oil, and given to us with a special prayer it represents not only the love of my family but the hope found in prayer.
  • On Jess’ side of the bed lays an extra blanket (I get too hot for it to be on my side!) that was quilted by dozens of hands from my sister’s church up in Federal Way, Washington. Hand stitched and prayed over by that community, the quilt was finished only once they added dozens of cream colored loops which represents all those fighting central nervous system cancer along with me. This blanket reminds me of those who are praying with and for me from both far and near–strangers and loved ones.
  • A box sits in the top of my closet and is filled cards, notes, drawings, and gifts from all of you. Most of them are from when I was in the hospital, though not all. I’ve kept virtually every note sent to me during the last eight months and I hold onto them as precious commodities. It’s clear what that box represents–you. Your love, your care, your concern.
  • (I forgot this all-too-important bullet point in my first draft!) An old case for glasses sits next to my bed stuffed full of origami cranes. One night when my children were being babysat they worked with their babysitter in an effort to fold 1000 cranes for me. I think they maxed out a little closer to ten. But after making the cranes both India and Jones quietly whispered a prayer onto each crane before putting it in the case. During my radiation treatments I always carried a different colored crane with me to the clinic. I love those little cranes, I love what they represent, I love that my children covered them in prayer, I love that my children never told me what their prayers were, I love that my children are praying for me.

This week I’m going to get my ears pierced and start slowly gauging them. I don’t know if I’ll look particularly well with my ears done and I’ve always thought it might come off a little goofy on me. But I feel like it’s something I need to do. It’s symbolic. Like everything else above it represents something beyond its tangible reality. Everything in my life is about fighting cancer, about maintaining energy, about restoring normalcy (or something that we dare to consider normal) and everything in my life is temporary. We can’t plan far out ahead, we can’t commit to much in life because we don’t know what the next day, week, or month will bring. So by gauging my ears I am telling myself that I can do something that has no other purpose that to be fun in and of itself. I am telling myself that I can do something that requires longevity (gauging your ears is a long process). I am telling myself that my life is more than just fighting cancer. It’s symbolic.

Coins, stones, cards, blankets, jewelry…they’re all inherently worthless…but they represent a reality. A reality that I want to more fully live into. A reality that I want to continuously be aware of. A reality that doesn’t often seem very…well…real. That I can get better. That I will get better. That people do care. That prayer does make a difference. That there is more than the last eight months.

The Last Month…

It’s funny, depending on the day or the hour you catch me my answer as to how I’m doing or how things are going will be vastly different. The last month has been a whirlwind–at some points a whirlwind of nothingness and at other points a whirlwind of excessive catch up. Let me start off with the tough stuff and end with the goodies…

  • Back pain is a pretty normal thing for me (duh). It usually comes and goes, gets bad for a short period of time and then goes away. But the back pain that flared up about a month ago did seem to want to go away. Instead it slowly grew worse causing sharp pains in my back and abdomen. It got so bad that anything that created pressure (coughing, sneezing, laughing, etc.) would cause such intense pain it would occasionally bring me to tears. Needless to say it sucked. We tried Oxycodone, Vicodin, alcohol (just kidding) but nothing worked. The only thing that brought reprieve was laying down in bed.
  • Right as the back pain got to its worst it was time for a new round of chemo. I started that round on a Tuesday night and by Thursday I started feeling the effects.
  • Lastly I’ve been fighting a gnarly little infection in one of my toes. Simultaneously as I started chemo the infection took a turn for the worst and the doctors saw fit to give me some iv antibiotics and two other pill form antibiotics. What was most miserable about these antibiotics was that they made my stomach incredibly sick. So between taking two different antibiotics four times daily and taking chemo pills once daily I was pretty much constantly taking a medicine that was making my stomach sick. No fun.
  • As I’m fighting all this crap and sleeping eighteen hours a day Christmas was barreling down upon us and I was no help! Jess was frantically trying to take care of me, take care of the kids, work, AND get ready for the holidays. It was an intense time and we weren’t making much headway.

So that’s all the tough stuff. Let me now share with you some of the good stuff!

  • After being into the ER twice I was finally able to meet with both my oncologist and my naturopath on Wednesday afternoon a few days before Christmas. Between those two visits and the stuff they did to/gave me by Thursday morning I was a new person. The back pain was completely gone (turns out it wasn’t back pain but actual nerve pain from my tumor pressing on my spinal cord) and I was up and moving again…just in time to get ready for Christmas!
  • We were able to spend a whole day with my dad’s side of the family out in beautiful Yamhill County. It was amazing. We hung out, cut down a tree, sang carols, and drank tea. Many of the family skimped on gifts for themselves in order to show more generosity to my family. They showered us with notes and letters and written down scriptures of hope. Like I said, it was amazing.
  • Christmas this year was going to be at our house…but if you didn’t already put two and two together our house wasn’t all that clean at the time. One of the greatest Christmas presents we received this year was my mother-in-law and sister-in-law coming to our house and cleaning it top to bottom. This gift allowed us to focus our pre-Christmas time on being together as a family, making snowflakes together, Christmas shopping, etc. It was a wonderful gift that truly allowed us to enjoy the Christmas season.

Man, I could go on and on concerning the generosity we’ve experienced in the last month. People have flooded us with meals, thoughtful notes, and more. Our Christmas Eve and Christmas morning times were calm and fun and memorable. Since that Thursday (when I started feeling better) I still have not left the house much because it’s been a time for our family to be together. I’ve missed seeing many of you but am glad to miss out on seeing y’all if it means that I get to be with my wife and kids more.

I know this update was a bit scattered but it’s been an intense month (an intense year!!) of changes, of really really good times and of really really rough times…that’s life though I guess!

 

The Scars of Humanity

To be human is to be wounded–it is to have scars. Scars are just mile-markers in a story and to be human is to have an active part in the telling of yours and others’ stories.

The massive scar on my back is an often hidden testimony to my surgery over the last month. My limp is a memorial to my fight against cancer. In the Jewish scriptures their ancestor Jacob walked with a limp and it reminded him (and everyone else) of his struggle with God. Jesus has scars on his wrists and his side that bear testimony of his being human. Gandhi’s physique told a story. Mother Teresa’s crippled feet capture that she always gave away the best shoes to others while keeping the worst for herself. Her feet (and her shoes) told a story about her life. Scars. Markers. Memorials.

I’m not placing myself as an example next to Jesus, Mo T, Gandhi, and Jacob as if I’m anywhere near their level of sacrifice. That’s not the point. No, I’m actually placing all of us next to that lineup because like those icons we all bear the scars of being human. We carry with us baggage from how our mom or dad parented us, from how a family member inappropriately touched us, from the death of a friend, from depression, from an epic fight with God, or from an innumerable list of things that scar our bodies, our hearts, our selves.

We are scared people and we need not be ashamed of them. They are a part of us but they do not define who we are. Think about scars. What do you do with a cool scar? You show it off right? You’re proud of it. You’re not proud of a scar because you’re proud of the fact that you don’t use proper knife safety; no you’re proud of it because its in the past, because you’ve moved past it (though its not left behind), you’ve overcome it (though it has left a mark).

I like the term coined by the late Henri Nouwen–we all have opportunity to function as wounded healers. We’ve got scars and scratches of many kinds–but we proudly own those stories as a part of our past, as a part of who we are. We are all wounded. Some of us are being defined by our wounds, we’re living out of the story that caused those cars and thus are dying from them. Some of us try to pretend like we aren’t scared and thus live in awkward ignorance and have little story at all. All of us, however, are invited to live as wounded healers.