Our Story As Best I Can Tell It Now

I don’t know why I didn’t do this first thing, but let me lay out for you as best I can the story of what’s been going on the last few months with regard to all this filthy disease stuff.

  • Over 4 months ago my right leg randomly stopped working. There was no pain, no numbness, nothing particularly alarming. It just flopped. I actually noticed it while walking down main street, I was annoyed at the sound of my foot slapping the ground. I didn’t think much of it and just tried to walk “better” to the extent that I didn’t even think to tell my wife. It was probably a strained muscle (I work out so often right?!). Jess noticed about three weeks later as she claimed I was “lumbering as if i had gained weight”
  • My parents bugged me, my wife lovingly requested me, and finally I saw a doctor. The doc checked me out, had me stand on one foot (poorly), and a battery of other tests that showed that…surprise…I couldn’t stand up well. She began to order an MRI of my lower back because of my single symptom but instead decided to check with a neurologist colleague at OHSU who changed the order to a neck and upper back scan. This change changed everything. Had it not been for that change the tumor would have been completely missed by the scan!
  • And then my clinic did what they seem to do well…they never followed up on the MRI order. In a way it worked well because it allowed us to continue our family trip to Disneyland without any larger impending cloud raining on our adventure. The only negative here was that the week before our trip south I started getting more symptoms. Numbness in my feet, sharp unbearable pains in my back, tingling in my ‘good’ leg, and shooting abdominal pain. In one last effort I tried to see my doctor before we drove to the DL but was informed that she was only seeing women that day…so I laughed, wrote it off, popped lots of Advil, and waited ’till we got back from our trip.
  • Disneyland was awesome and I won’t tell you about it here. The stroller served as my cain and I hobbled around just fine. I had to be somewhat cautious about what rides I went on and only made a bad choice once…or twice. Otherwise, a slow pace, a stroller, lots of pauses, and Advil kept me moving just fine.
  • On the first Monday back from an amazing time in Disneyland I was finally able to sit for an MRI (it only took me calling the MRI office and my clinic to personally make the referral happen). From morning ’till afternoon I laid still for differing MRI machines as they sought a powerful enough one to see through my massive muscles (I think that was the reason). They told me it’d be 4-5 days to get a report but it was that very night that we had a missed call from my doctor…For me this was the first legitimate sign that I actually had something wrong: super rushed results.
  • Tuesday morning we went into our clinic for a follow up appointment to Jones’ swollen lymph nodes and I came along to hear from the doctor instead of over the phone the rushed results of my MRI. I and India in one room with my doctor, Jess and Jones in another room with his doctor, we came out to share the news with each other that I had a spinal tumor and Jones could possibly have lymphoma. Not a great start to the morning. From the lobby Jess left to get Jones’ chest x-rayed and I left for a meeting…and our day was off (though this time with some new knowledge!) My doctor assured me that she had rushed the surgeon referral and that I’d hear from a surgeon within 24 hours to answer any of my questions (because she had very few if any answers) so without any information really (size, type, placement, etc.) I waited to hear from a surgeon.
  • By Wednesday afternoon I had still not heard from a surgeon, so I called and got my surgeons number and rang his office…they’d never heard of me nor received a referral. So I called my clinic and they let me know that it’d be a two week process to get the referral through. I asked to see my doctor (still wanting some basic info and some pain meds) and they said that she wasn’t in but that I could schedule an appointment for June 13th. I asked when she’d next be standing in the office and they said tomorrow…I said that I’d be there in the morning. Instead, actually, we ended up going to the ER so we could talk to a real live doctor and medical staff who might be able to tell us what kind of tumor I had, what the time frame was, and whether or not I could get some real pain killers. Best. Move. Ever. Within a couple of minutes of entering the ER I was rushed to the back and sitting with a great doctor who used to work in neurology. I left about an hour later with some basic (though not detailed) understanding of the type of tumor I had, the types that it could be, and (most importantly) with an appointment to see a real live surgeon the following day.
  • On Thursday the hammer dropped and I was finally able to sit down with my surgeon and find out what’s going on. Quickly I discovered that the chances of cancer were small (10%), that the tumor was actually inside my spinal cord splitting it into two, that I was looking at a 5-6 hour surgery where they’d be shaving off unneeded parts of my spine and filleting my cord open in order to remove the two inch tumor sitting inside. I learned that it’s most likely a nice encapsulated tumor that shouldn’t have fingers or tentacles reaching into my nerves (very very good news!), and I learned that I could be in the hospital anywhere from 1-6 weeks depending on nerve damage. I nearly passed out as he shared the information, but it was truly a relief to finally know what lay before me.
  • The surgery wasn’t scheduled until Tuesday, May 31st in order to give my body time to soak up some delicious steroids that will reduce inflammation and also to allow for a team of technicians to be assembled that will put pins and needles in me during surgery and monitor my nerves so as to keep the surgeon from damaging anything more than what’s already been damaged. Essentially the surgeon will poke around in my spine until he finds the least obtrusive way in to get rid of my little tag-a-long in hopes that he will not do any greater damage to my glorious nerves making my bottom half function.
  • Since then it’s been a process of figuring out what functioning looks like until the surgery. The ‘roids are doing a number on my body and the tumor continues to tweak its way that it bugs me. At any given moment my whole abdomen edging up into my lungs goes numb and swells, my face and jaw ache constantly and swell and go numb as well. My ‘roid rage is coming out through tearing up constantly (read that blog post here) and I’m also kind of angry all the time (which is completely abnormal for me). The sharp pains in my back are pretty much gone thanks to the steroids and vicadin but I’ve found that the more I’m off my back the less of my body and face I can feel, the more my heart races, the more tired I get, and the harder it gets to walk. It’s been a tightrope trying to figure out if I should lay flat and be bored out of my mind and useless or up and moving and make my body function worse…but who cares right ’cause I’m getting this thing cut out in just a couple more days!!!
  • All through this I have felt incredibly blessed. Seriously. What if I had found this stuff out right before Disneyland? I’m glad I didn’t. This could have happened a month or two sooner and messed with me finishing grad school. I’ve got an amazing surgeon who has come recommended by three different medical professionals from three different hospitals! I am constantly (constantly!) being reminded of how loved and cared for I am by my neighborhood community, by my former (and present) church communities, by my family, and friends. I have heard overwhelming reports of people (and whole churches) praying from the Philippines, to Korea, Italy, Uganda, Canada, and all over the US.
  • The story is so much more nebulous with Jones right now. Until yesterday he was chilling with a 105 fever for a week and we’re still waiting to get his lymph nodes biopsied. Yesterday, however, he woke up with one of his larger lymphs extra swollen and harder so now, while I begin my surgery on Tuesday Jess will be scheduling his biopsy. The life of a mom eh!? We’re continuing to pray against lymphoma being a part of his story.

Thank you for the notes, emails, thoughts, and prayers. We don’t really know what’s ahead of us in many ways but we are moving forward with confidence in what God has and is doing in and around our lives. God’s story (as I understand it in the Bible and in my own experiences) is always this mysterious blend of messy life and surprising hope. I feel like we’re living in that tension along with a giant cloud of witnesses that include many of you standing beside us who have walked in messier places, who have experienced hope more fully, and who are inviting us into a way of living that is both beautiful, difficult, and ripe with significance.

peace.

Children and the Imago Dei

Watching my son walk through the living room just now I was struck by the fact that he’s such a little person. I don’t mean to say that he’s a small child, but that he’s actually a functioning, living, breathing, thinking, feeling short person who has not yet lived on earth for an extended period of time.

I realize that right about now I’ve confused or annoyed you, but here’s the thing: we treat children as if they’re sub human (definitely sub ‘adult’ human). We naturally desire to control them, to manipulate them in order to facilitate meeting our own needs as adults. We don’t view them as little people (think human being) we view them as sub-human people. Think about it, if you’re in conversation with a friend over a cup of coffee you will either ignore your ringing cell phone or you will give ample explanation why you’re going to answer it in the middle of your conversation. What do you do if you’re talking to a kid? If you’re in conversation with a child and your phone rings how often do we simply answer the phone without worry about the fact that we’re interrupting our conversation with a child? I teach my children constantly (not intentionally) that my phone ringing is more important than my conversation with them. How tragic!

How much easier is it to scream at a child than it is to scream at an adult? How much easier is it for some to justify hitting a child (think spanking) than to justify hitting an adult (please don’t think spanking)?

While children are obviously in a much earlier place of learning–learning how to function, how to read and write, how to use their words kindly, how to cope with stress, etc. the fact that we’re helping to train them should not give reason to treat them with lesser respect than we’d treat an adult. Adults are learners as well right? We’ve just had more time to learn more things…sadly I question whether we’ve learned more than children about how to respect others (could this be because it wasn’t modeled?)

We’ve probably all heard that respect is earned not given and I think I agree with that to an extent. But there’s also that small little fact that as a follower of Jesus I believe that every person (whether tall or small) was created in the image of God and therefore deserves respect and dignity because of his or her identity as beautiful icons of God himself. Age or learning curve cannot change this fact…can it?

A 3am Poem About Vomit

(I just finished writing this poem for our housemates. It’s about 3am and I’m going to bed. Please don’t judge my grammar or rhyming capabilities. And please also note that our poems are always a joke…though this one was written out of pain and misery)

Vomit, vomit everywhere but not a drop to drink

Spewed from a top bunk loft it couldn’t be too bad one might think.

But that thought would be wrong.

From top bunk mattress to the bottom bunk

not one, two, three, but six blankets now carry the distinct funk

A rocking chair, a folded pack ‘n play,

a chest of drawers, what else can we say?

Lots.

Between the box springs and all over his body,

under the bed, up the walls—oh, if only this were potty.

But it’s not.

It’s barf, barf-o-rama, barf on his pajama(s)

It smells of sweet curds rotten to hell

it looks of old spaghetti, the story of Easter it does tell

Did we mention it went up three different walls?

The final vomit is one of metaphor

A vomit of vocals a little girl had in store

Screaming and crying, her stomach does hurt

Take her to the ER? I’d rather eat dirt.

It’s now 3am and our bed’s full of kids

We’re headed to Motel six, please make them some crazy pancakes*

Thanks.

 

* Not really, but chances are slim that we’ll be praying with you right now.

 

Hubble

Last night I took my son to see Hubble at the Omnimax theater in Portland. It was amazing. At one point we were staring at images 10 frillion* light-years away, we watched stars forming in their embryonic stages, we saw galaxies spread across the universe like legos on my children’s floor. It was amazing and breathtaking. I absolutely loved that the take home message that narrator Leonardo DiCaprio left us with was that the earth is completely unique. We circle one star (the sun) in a galaxy that is filled with billions of stars, in a universe that is filled with billions of galaxies…and yet there is something distinct and unique about earth.

I love that.

As a side note, one of my sons first thoughts after leaving the building was to exclaim “But global warming is washing away our world! Soon all will be desert!” It was nice to see him respond well to my reassuring words of hope for our future. We can make a difference, we can make healthy choices, and our hope is in resurrection not in green technology.

* Frillion might not technically be a number…tbd.

Can a Boy Like the Color Pink?

I enjoyed a discussion last night at my children’s school classroom meeting. The parents were brought up to date on the discussions that were happening in the classroom and we were then invited to engage in a similar discussion amongst the parents in small groups. The topic was discrimination with an emphasis on men’s and women’s prejudice. Can a boy wear pink, can a girl be Spiderman, can a boy play princess, can a girl play football? The children were making these distinctions and were discriminating based on their judgements about what boys can or cannot do (and vice versa with the girls).

The two questions that they asked the parents to discuss were “growing up, what things were you taught were only ‘boy’ things and only ‘girl’ things?” and “what gender specific things do you want to pass on to your child?”

I was surprised at how hard the second question was to answer. Most everything I came up with was actually gender neutral. If I said that I wanted to train my son on how to treat/date a woman/wife with respect is that not just a tangent on the gender neutral idea of learning to value, love, and respect humanity? If I said I wanted to train my son to be a leader would I not see it valuable to train my daughter similarly (especially since she seems to evoke strong leadership qualities even at the age of three)?

Miroslav Volf in his amazing book Exclusion and Embrace suggests that we have very little to differentiate gender roles aside from the body itself. Essentially, according to Volf, we teach our children how to be healthy, whole, loving human beings over and above the gender distinctions that our culture currently buys into.

I’m intrigued to find out what many of you think. Can you identify gender specific elements that you’d like to guide your children into?