Category Archives: Cancer

Impulse Control…

Posted on by
Reply

My son and I are amidst the same struggle. We both have legitimate excuses: he’s five and I’ve on ‘roids. Neither of us want to let those excuses excuse us from responsibility for being a jerk. Again, he’s five and I’m twenty-eight.

Jones was listening to his favorite book on tape A Wrinkle In Time and was therefore in his fog that comes with his complete absorption into the story.  It was during this time that exuberant young full of life three year old India came and tried to look (or take) what Jones was holding (in this case maybe a blanket? It honestly doesn’t matter). Without hesitation or little provocation Jones began to pummel his sister repeatedly and without abandon. She responded as a little three year old girl does and should: life as she knew it was over. My response was to immediately put Jones in time out on the stairs…kind of. Right now I’m really having a hard time regulating my emotions–they swing more than they ever have and its been challenging for me to say the least to learn to regulate these new found extreme emotions. I’ve always been a steady, even, and controlled person so I even scared myself when I forcefully ripped Jones’ headphones off his head and ripped a pacifier out of his mouth (another story for another place). Even further when Jones started screaming and then shrieking (I cannot explain how loud this “shriek” part was) I yelled loud at him (STOP!) grabbed his shoulders and told him to go upstairs. I know I grabbed his shoulders too hard because it was clear but also because as he’s crying and going upstairs he’s saying “you don’t have to be so rough with me…” It was not good parenting…and Jess took over…upstairs. I stayed downstairs, cooled off, and tried to reheat dinner. Thanks to grandma (who’s eyes were quite wide at this moment) dinner actually got made.

I say all that confessionally but also to get to the conversation that my son first had with Jess and then had with me. I’ll try to recount it as best I can (and I might kind of blend the two conversations a bit into one).

Jones: (tearfully) I don’t want to do things like hitting India. Its like my brain can’t stop it. I try and I try but I can’t seem to control myself. I don’t know what to do I just can’t stop!

Jess: It’s hard huh. That’s called impulse control. That must be really scary to feel out of control.

Jones: It is scary and I don’t know how to stop (crying increases). How can I control myself when I just do it and don’t know what I’m doing? I don’t want to be like this! And I don’t know why daddy is acting like this either. He never acts like this. Why is he so harsh? He just grabbed my shoulders hard and he doesn’t do that!

Jess: Daddy is having a hard time with impulse control too huh.

Jones: Yeah and I don’t like it!

(later, laying in bed with me and after rehashing the same content above)

Me: It sounds like we’re really experiencing the same things right now huh Jones?

Jones: Yeah, I don’t like it.

Me: Me neither. Did you know that daddy is on some drugs right now called steroids that make it hard for me to control my emotions?

Jones: Really? Why do they do that?

Me: Well the steroids are helping my body, but they come with things called side affects. One of those side affects is all this extra emotion that I’m having to learn how to deal with. We’ve got to work pretty hard to make good choices even when we’re feeling out of control huh?

Jones: Yeah. I can’t wait ’till you’re off steroids.

Me: Me too. But I don’t think its just the steroids I think daddy is also just learning how to cope with all the changes in his body. Do you think we can both work on trying to make good choices even when we’re feeling out of control?

Jones: Yeah I think so…Dad, is your tumor benign?

Me: What? (I was completely caught off guard here) Actually they thought it was but now they’re actually still studying it trying to figure out what it is.

Jones: What’s benign again?

Me: Benign means that the tumors not doin’ much, it’s just sitting there in my back chillin’. But guess what, they sent my tumor to a place called the Mayo Clinic and it’s one of the best hospitals in the entire world!

Jones: WHAT! (laughing) The best hospital in the entire world! Do they let little boys go there?

Me: I bet they do.

Jones: I want to go there. What are they doing with your tumor?

Me: They’re studying it and watching it. It’s acting weird and they’re trying to figure out what it’s doing.

Jones: Well I’m glad that its at such a good hospital. I hope I can go there. But it’s not cancer right?

Me: (I chickened out) I hope not, but we’re still waiting to find out. Hopefully we’ll find out soon.

Jones: Well I’m glad it’s at the Mayo Clinic.

Me: Me too.

*end scene*

 

Good News For My Son

Posted on by
10

Did you know that a lifelong undiagnosed extreme fruit allergy will ruin and attack your immune system? It can cause chronic ear infections, wreak havoc on your digestive track (causing other sensitivities to food), and it causes neurological damage (not permanente) among other things. Essentially it messes with your body in intense ways…as if you’re eating poison…which you are.

After being off fruit for two weeks my sons body is healthier than its ever been. While it’s hard to articulate and it’s still up and down due to the nature of our life right now even his ability to regulate his extreme emotions and intense sensitivities has been transformed in this short period of time. Even further, and of the most importance right now, in these three days his swollen lymph nodes have begun to shrink to the point that yesterday our doctor exclaimed “There’s no possible way this boy has lymphoma!”. Turns out his lymph nodes were maxing out after years of storing up toxins due to this unknown extreme allergy! (my wife could write a three page article here detailing Jones’ medical history in order to show how many connections there are to symptoms of a bad fruit allergy and his health concerns since birth)

I cannot tell you how glorious yesterday was, how ecstatic all of us (including Jones) were to know that not only do we no longer have to fear Jones having cancer, having a biopsy, or having to have his lymph removed but we also get to see my son head down a path of health! He has been plagued his whole life with chronic ear infections, with food allergies and sensitivities, and with a brain that functioned so intensely that it often would get out of control. In the last two weeks he has shown a calmness and new level of emotional articulation that are new*, his body has looked healthier, and most importantly his lymphs have begun to shrink.

Anyway, the point to all this is that my son does not have frickin’ lymphoma! He’s not having a biopsy! He’s not having surgery in the next week or two! This is amazing, wonderful, glorious news and we have to thank all of you for your constant and vigilant prayers. I mean think about it, these prayers not only brought healing to his neck but are going to bring a holistic healing to his entire life. I wasn’t even asking for that…but now feel like I can and must exclaim in solidarity with one person from the Bible who said “Thank you God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ever ask or imagine!”

Maybe I just need a bigger imagination?

 

*Don’t get me wrong, all of us in our house are still struggling with very extremem emotions that swing at any given moment even on a wonderful day like yesterday…but that’s the blog I’ll be writing tomorrow!

Causality or Conspiracy

Posted on by
17
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

Posted on by
2

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

Posted on by
2

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).