Tag Archives: Cancer

Brain Scans

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I received some preliminary results back from my brain MRI scans and it turns out I’ve got some squiggly lines in my brain.

Squiggles.

This wasn’t the ‘official’ appointment to get results back because the tumor board has not yet gathered to look over my scans and slides (shoot, because of a mixup I haven’t even had the MRI’s of my spine done yet!). No, this was just the routine checkup with my radiation oncologist in order to make sure my back was looking good, etc. Here’s how it went down.

Prior to the doctor coming in the nurse pokes her head in the room and asks “have you talked to your brain surgeon yet?” “No” “Ooohhhh, the doctor just wanted to know.” (and then awkwardly closes the door)

Jess and I exchanged knowing glances–realizing that there’s only a few reasons why my brain surgeon would have need to schedule an appointment. India, picking up on the tension, exclaimed “Oh shit!” (I swear she didn’t learn this from me!)

The doctor comes in and asks nonchalantly how I’m feeling. “Your leg doing ok? How about your head? Any headaches or blurred vision?” (it’s as if she thinks that asking these questions causally will keep us from picking up on the fact that she’s fishing for something!) “Nope, everything’s been really good!”

“Well we got your brain scans back and I thought we’d briefly look over them in anticipation of the October 12th appointment…”

So here’s the dealio yo, essentially when I had my previous brain MRI done in June there was a small blip, an ‘artifact’ that could or could not be anything significant. The good news is that this spot has not changed, it hasn’t grown or done anything…though it is still there. The bad news is that there are two additional ‘artifacts’ in my brain that were not there before. The radiologist referred to them as small squiggles. The largest of the two new squiggles is 2.5 cm in length and does not have much mass to it. Neither looks like a tumor because of their lack of mass and three dimensionality. BUT the reality is that two new things have popped up in my head. The only new things you want popping up in your head are good ideas…not artifacts…or squiggles.

It’s abnormal for something like this to pop up and she really had no idea what to say about it. Her only comment was that “nothing about my case has been normal thus far and on October 12th when the tumor board gathers (with my spinal scans as well) they will put their heads together and try to figure out what this might be.”

So until then we wait. We wait knowing that there’s something not right. It could be the beginning of tumors. It could be brain infection. It could be something else. We really have no idea and none of these options would be considered within the realm of normal.

Gotta love being abnormal.

I think India’s got it right. She might have a potty mouth…but I think she’s got it right.

It's Simple But it's Good

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Six years of education centered around theology, eight years of college level education overall, working in Portugal as a missionary for two years, working for six years starting a new faith community, and beginning a new and different movement here in downtown Vancouver…and my greatest insight, the thing that has struck me the most, what I’ve learned most through my crisis with cancer is that the “good news” is…well…good. When it’s lived out (particularly when it is lived out radically) it is tangibly good to those who experience or observe it. For someone who considers themselves a follower of Jesus this should be common sense, “duh”, obviously, of course-type of information. And yet, and yet…AND YET it is not so commonly experienced! I see far too many people who are followers of Jesus and yet seem to not experience the goodness of it themselves! They equate following Jesus with going to church, they equate it with a system of rules, with a system of morality, etc. While I believe church is a part of the goodness of following Jesus, and while I believe that Jesus invites us to say “no” to certain things…the reality is that when those things are the core to your belief I think you’ve missed the boat! You’ve missed what’s so good about the “good news”.  Going to church isn’t good news–being a part of a community of people who love you no matter what, who will be honest with you, who care for you, and who invite you to learn to reciprocate–that’s good news! Understanding yourself by what you say no to is not good news to anyone (unless you’re a seeker of control)–but learning to say no to things that are destructive to self and others–that’s good news!

Simply put, good news is good. Its tangibly good. It’s noticeably good. It’s nearly irresistibly good. It’s attractively good. And it took me getting cancer to really believe, see, and experience this.

Jesus invites us into a life that the Bible refers to as gospel (good news) and I hope it doesn’t take you getting cancer to truly and honestly believe it in all its beautiful simplicity.

Clicking, Ticking, and Those Wonderful MRI's

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Today’s the day I get to go and take a (constantly interrupted) nap in that lit up tube with ear plugs firmly in place to protect me from those odd sounds. Oh the rattling, and clicking, and buzzing, and beeping! Oh the noise, noise, noise! How strange those MRI’s are!

Today’s the day that I get scanned from head to tail…but I won’t get results back yet. No, the results won’t come for some time (October 12th) and even then it turns out that the results won’t mean much. Here’s what we’ve learned in the last few weeks…

The MRI won’t tell us much. The scans could look horrible, they could look terrible, and it might not mean a thing. Turns out, though I don’t understand it completely, that the MRI’s don’t actually tell us much of anything. They can’t differentiate between dead tumor, cancerous tumor, and radiation damage. Essentially what we’ll get tomorrow is a new post-radiation baseline that we’ll measure from from here on out…unless of course it sees tumors in new places (that’d be a bummer).

All the data you read about online is dated. With my diagnosis there is very little information out there because 1. its rare to have a brain tumor start in your spine. 2. studies rarely look at a level three tumor (they’re going to study the level fours–what they originally diagnosed me with). 3. The oral chemo that I took is relatively new (last seven-ish years) and therefore is not accounted for in the data. SO, when many studies show that people with my tumor can and do make it five years before having their first relapse that is not taking into account the fact that we now have a new tool for fighting this type of cancer (the oral chemo). This is good news. Essentially what we’re saying is that medically speaking there is good reason to think that I’ll go another five years before having to deal with this all again…even better news, however, is that all along the way we have not followed what was medically assumed! We’ve far exceeded medical expectations in the recovery process…why stop now?

Turns out central nervous system cancer does not spread outside the central nervous system. This is great news too. This means that, unlike many other cancers that can and do spread anywhere, I do not need to worry about troubling symptoms in the rest of my body. I only need to stay aware of my neurological symptoms–numb feet, the function of my limbs, headaches, etc.–the exact things that I’m already becoming hyper-sensitive to.

The plan at this point is for MRI scans every three months for the first long while. Those scans will grow further apart as the years go on. The reality, though, is that it is the neurological symptoms that will most likely be the tell tale sign of good health or cancer growth.

In general the recovery process has gone so well, my energy level has improved so much, etc. that we’ve felt very positive since we finished radiation and chemo on August 22nd. However the closer we draw to the looming October 12th date the more nervous we get. What will we find out? Will it be anticlimactic and we’ll find out nothing? Will it be good news? Will it be bad? (if its bad I’m buying myself an ipad) To add to the worry, this week, my first week off steroids post-radiation (I’ve gone off steroids a few times only to go back on later), I’ve started to have some worse symptoms develop in my legs. My ‘good’ leg has started to have greater numbness from the knee down and incredible numbness in the foot. As a side note there is also some kind of freaky infection in my middle toe on that foot and its swollen like a little smokey sausage! Any negative changes always cause tension and worry.

All of this is to serve as an update and as an invitation to keep us in your prayers! If you here any creepy clicking, ticking, and beeping think of me today. Gotta love those MRI’s.

What is Healthy Recovery?

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So we’re in recovery mode now. I’ve been done with radiation and chemo for a few weeks and slowly but surely I’m gaining back strength and energy. In many ways I almost feel like a real boy again (I’m picturing myself saying this like Pinocchio).

But it’s been a strange process to realize how difficult recovery is truly going to be. The physical recovery is one thing: neuro-rehab (starting at the end of the month) to hopefully get my paralyzed leg working fully, eating healthy and normal again now that I’m able to, getting into normal sleep habits now that I’m off steroids, and learning to balance my energy so I don’t over do it and crash. It’s the other recovery stuff that is so difficult. I’ve got a wife who’s been a single mom caring for an invalid for three plus months and she’s tired. I’ve got kids who are not only grieving the reality of the previous three months but are still missing the dad that went on bike rides with them and could wrestle with them. And then there’s the reality of MRI scans on September 22nd and the October 12th meeting with my oncologist to determine what’s next. Am I cancer free? Has it spread to my brain? Has the tumor grown? Is the tumor gone?

Relatively speaking I feel great (relatively speaking!) part of me is ready to go back to work full-time, to be the busy body around the house that I used to be, and to be out in the real world more consistently. But I am learning (thanks to advice from family, mentors, doctors, and friends) that this is not healthy recovery!!!

Here’s what I think a healthy recovery is looking like for us (though it may change tomorrow):

  • Spending lots of time together as a family
  • Finding a good and simple rhythm to our life as a family (thanks to Jones going to school we’re actually achieving this!)
  • Discovering and utilizing tools for our kids to work through their grief and anger over my sickness
  • Taking time away for just Jess and I (counting down to September 30th at the beach)
  • Getting a dog (yes, we just got a dog! Even though Jess and I are definitely not dog people it seemed like a good idea for our kids. We call it a therapy dog…and her name is Ruby)
  • Physical therapy–starting at the end of the month. Hopefully it’ll help and I’ll one day be able to drive again!
  •  Creating space for Jess to recover–this might be THE most important thing considering how much she’s given over the last three months
  • Keeping life simple and not adding in too much stuff and clutter (even though we are eager to do so many things!)
  • Pursuing a healthy spiritual vitality for our whole family
  • Keeping a simple, yet consistent, connection with our downtown community
  • Finding ways to laugh, have fun, and be silly.
I’m sure there’s more that belongs on that list. Recovery is tough ’cause it’s not just a matter of doing the things we did before. Everything has changed, we now live in a post-my-dad-has-cancer world, and things are different now. Recovery is exciting too because it’s a process of discovery–discovery of what the new ‘normal’ is going to be.
Thank you all for being present and patient with us as we discover and re-discover what healthy recovery looks like.
peace.

Ninety-Nine Thank You's…and yet still not enough

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It’s time I said thanks to a few of you…

  1. Thanks Nancy for the balloon you brought to the hospital while I was in surgery. Every kid that visited me played with it (no joke)
  2. Thanks Amy for buying my family really good pizza the night before the surgery. The Meaty Beatty Big and Bouncy was a great way to head into a pre-surgery fast.
  3. Thank you Erika for coordinating meals so amazingly
  4. Thank you Patty for helping to keep our house from being gross. You practically killed the cancer by yourself (if it’s actually gone)
  5. Thanks Jon and Leandra for dinner!
  6. Thanks Debbie for not only bringing dinner but all sorts of other goodies
  7. Thank you Gina for depositing money into my bank and for helping with laundry
  8. Thank you Wintermute for the Bible. I’ll be eagerly waiting to see you next year.
  9. Thank you Josie for writing me a funny joke. I like jokes.
  10. Thanks Compass, Paul, and others for the night of prayer prior to surgery
  11. Thanks Aaron and Brittany for the ICU thai food. I wasn’t supposed to be on solid food yet…but it was worth it
  12. Thank you Renovatus kids and teens for the cards
  13. Thank you Carson for always going above and beyond when there’s a large something to draw on.
  14. Thanks Mom for keeping my garden, my children, and my wife alive during all this
  15. Thanks Luke and Marie for the delicious food!
  16. Thank you Granbergs for your leadership and mentoring in prayer
  17. Thank you Anni and Mo for the fund raiser. What a humbling and fun night
  18. Thank you Pepper for the book
  19. Thanks Sherilee for caring for my wife and keeping my house from being gross
  20. Thanks Matt, Tim, and Christie for the movies. When your awake at 4am what else are you supposed to do (besides write blogs and cry by yourself at times!)
  21. Thanks Graham fam for being present and available and for getting things done.
  22. Thanks for the pot of flowers Robbie and Chrissie…they only just died yesterday!
  23. Thanks to Karl, Sunrise, Emily, Phil, Erika, Ken, Laura, and others who were there during surgery even if I never saw you.
  24. Thanks Sam (Arslanian) for the robot drawing. My kids like robots too.
  25. Thank you Kathy for brining us flowers from your garden. You know we’re jealous of your edible and beautiful landscape
  26. Thanks Paul for watering my garden that one morning
  27. Thank you Rebecca for teaching me how to use my medicine!
  28. Thanks aunt Tina for giving me advice on getting my catheter ripped out
  29. Thanks Jill for so much, but especially the Wine Dogs…so incredibly strange and cathartic
  30. Thank you Federal Way cronies for the quilts (my son sleeps with his every night)
  31. Thanks for the milk shake Brandon
  32. Thanks Achterbosch’s for letting me watch some basketball and for all the great food you’ve provided
  33. Thanks Gina for the random Ice Cream Renaissance
  34. Thanks to Mo, Kate, Dwayne, Levi et al for all the little coffee and food surprises
  35. Thanks aunt Dee for the book but more especially for the trinkets for the kids
  36. Thanks downtown Ashely for secretly dropping off a card at the house. It was great to see turn up
  37. Thanks Anni and Kayli for the good food and creepy card
  38. Thanks to the mysterious person who decorated and wrote messages around our house when we came home from surgery. I still don’t know who you are!
  39. Thanks Mark for fixing our stair rail. I haven’t fallen yet.
  40. Thank you Rebecca for the concern and initiating prayer
  41. Thanks Katie for being one of kid’s favorite friends and for spending time just chillin’ at our house
  42. Thanks to the quilting aunts and Grandma for the prayer filled gifts
  43. Thanks Roy for fixing things ’round the house and giving us your wife all too often
  44. Thanks Sherk crew for weeding the backyard
  45. Thank you Brandon and Angela…too much to say here, but you care for so many people!
  46. Thanks Kim and crew for helping to clean the house
  47. Thanks Valentas for bringing over dinner (you can bring the same meal again if you want…and if you’re capable)
  48. Thanks Brittany and Monica for the pampering you gave to my wife
  49. Matt and Oso thank you for making the community meals work
  50. Thank you Chris and Trudi for the frozen meals. Seriously best vegetarian lasagna I’ve ever had. No joke.
  51. Thanks Sarah and Aram for the gf cookies
  52. Thanks Hope for being a last minute baby sitter and loving our kids so well
  53. Thanks to Kristy et. al for the amazing anniversary gifts and surprises
  54. Thanks to Melody and Jill for the massages
  55. Thanks Ben and Steve for giving me my first taste of good scotch prior to surgery
  56. Thanks Anni for the inspiring art over the last week (co-shout out to F&33rd)
  57. Thanks Sunrise for the great conversations via email and even occasionally in person (oh yeah…and for OMSI!)
  58. Thanks Matt for coordinating a hot date for my wife and i
  59. Thanks Sam for always coming over on Sunday’s to play with my ding dong
  60. Thanks Brittany for cleaning our house every week. You were awesome.
  61. Thank you Lynelle for checking in, for showing up even when we’re not home, and for your compassion.
  62. Thanks Rachel, Lincoln’s Beard, Beth, Jill, Jenney, Pepper, and so many others who donated things for the silent auction. Your art, creativity, and generosity inspire me
  63. Thanks for the Pok Pok Mo Mo
  64. Thanks for to Danny and Rachel and Sarah for all the Baja Fresh hook ups.
  65. Thanks Patty for the water hookup for the meals (that gf pizza was amazing!) and everything else
  66. Thanks Arnada Community Meal people for always leaving my kitchen clean during all of this…you don’t realize how much of a gift this is
  67. Thanks Aram for being a courier–you don’t realize how stress free and freeing it has been
  68. Thanks Sherilee for catching me
  69. Thanks Jenny for your poetry and your potted plants (that are still alive)
  70. Thanks Kileah for the milk and for bringing in food during surgery
  71. Thanks Brent for extending your stay longer just so you could be around during surgery
  72. Thanks Mo, Bridget, Cheryl and whomever else was a part of getting my wife in that spa
  73. Thanks Kevin for just happening to be there the morning of
  74. Thanks Grandma for teaching me about generosity
  75. Thanks Ken and Dody for dinner and for making sure we’re always able to pay our bills
  76. Thanks for the wine Mav and Niccole…especially the part where you drank it with us
  77. Thanks Grandma, uncle Greg, Dee (were there others?) for hanging out with me at one of my biggest moments (cath free!)
  78. Thanks Cheryl for taking over the Compassion Vancouver duties–what a relief!
  79. Thanks Mav and Niccole for being easy and available…such a blessing.
  80. Thanks Kris and Jim for bringing us vegetables (and those figs!)
  81. Thanks Liesl for dinner
  82. Thanks for the wings Ethan (OK, so it hasn’t happened yet…but it will)
  83. Thanks Toree for accompanying me to my new rehab gig with a milk shake in hand
  84. Thanks Aaron and Bekah for the frostee and to Chris for the milk shake…y’all didn’t know but I had just found out I was dying of cancer
  85. Thanks Oso for surprising us with coffee and thanks to Dwayne for making it happen
  86. Thanks James and Andrea for bringing multiple trips of stuff over from the house to the hospital
  87. Thanks Steve and Marlette for the surprise ice cream and the standard Youskyme
  88. Thanks Mo for making me cry all too often
  89. Thank you Ruth for the book. Can’t wait to read it!
  90. Thanks Danny and Rachel for helping with the kids and having us over for dinner too
  91. Thanks Steve for checking on me all the time, giving me rides, and being a good friend.
  92. Thanks Arwen for keeping my wife company at just the right times
  93. Thanks Jay for the Safeway hook up
  94. Thanks Nina for the shoes and backpack. This might be the most practical and necessary gift along the way. What a lifesaver
  95. Thanks Chris and Christie for bringing pancakes and turkey bacon over
  96. Thanks LaRae for the kind card and gift
  97. Thanks Jurgen and Azriel for moving the couch (harder than anticipated eh?)
  98. Thanks John and Brent for going bald in solidarity with me…sorry I didn’t go bald in solidarity with you.
  99. Thanks Mo, Dwayne, Kate, Levi, and Sarah for the hilarious picture that’s now sitting all around downtown. I don’t care if it brings in a dime…the picture is amazing.
I’m sure I’m only missing about fifty other people to thank. There are huge things I’m spacing right now and there are seemingly minuscule things that are missing from the list. From huge to small y’alls gifts and thoughts and generosity have been stupid amazing. We still have no idea what future prognosis await us…but at least I am confident with who stands beside us regardless of our future. We love you all. (in the time its taken me to write this final paragraph I’ve already thought of six more things that should be on this list! Because I like the whole ’99’ thing I’m not going to add them and just assume that this list will and should always be undone and incomplete. There WILL always be another person to thank…and for that I’m thankful!)