Category Archives: Update

A Poorly Written Update

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I’ve got no words left.* I have been overwhelmed the last few days by the reality of my health, by the response by the world at large, and by unknown future ahead of my family. This is probably a bit of a blogging faux pas (Ha, I don’t even know what I mean by that) but I’m just going to spout off some bullet points. As I think of things that I want to share I’m just going to bullet point it up. I’ve had all sorts of ideas for how to follow up this grim news and y’alls amazing response…but again, I’m at a loss for quality words right now…so bullet points will have to do!

  • For seconds at a time I’m tempted to not believe my own reports. I’m tempted to just say “Nah, that can’t be right. I’m not seriously dying. I couldn’t seriously die in three or six months. Nah, nope…” I think much of this is actually stemming from the fact that I absolutely cannot conceptualize what the next stage of my bodies digression will look like. Up until now it’s always been varying stages of numbness and back pain (to overly simplify things a bit). I can conceptualize what worse back pain looks like, I can conceptualize what my feet being more numb or my hands tingling will feel like. But the next stage of my bodies brokenness is going to be wholly worse and I’m not sure I’m able to imagine that reality! And to be honest, I think I’m ok with that.
  • I can’t keep up. I’ve always prided myself on responding to virtually every email or message I get. I love people, I love conversation, I love engaging in dialog, but I’m losing the battle–err, I’m losing the battle TO MY INBOX is what I meant to say. Y’alls response has been amazing, and beautiful, and refreshing, and completely impossible for me to keep up with! Thank you! Keep ’em coming but there’s no chance I’m going to be able to track. You all are amazing. Thank you.
  • My friend Boone wrote this beautiful song about our story. I don’t know how people do this stuff, but it’s beautiful and you should listen to it–not because of me but because it captures Boone so beautifully, who he is and what he’s all about. http://su.pr/AfAgjg
  • I’ve been touched by a number of people’s blogs that they’ve written over my times of being sick. I’d love to share them all with you ’cause they’ve meant a lot to me…but finding this stuff has turned out more difficult than first intended! Here are three that I was able to drum up: http://su.pr/7OSar8 , http://su.pr/2KjuEe, and http://su.pr/1i6o8y 
  • We’re going to Disneyland. In two hours! Without going into all the horrific details we spent most of yesterday agonizing about the fact that there was no feasible way to move our planned June trip to Disneyland with all of Jess’ family forward to a time where we knew (or at least had a more safe guess) that my health wouldn’t ruin the trip. We worked hard to figure out any possible way to move it forward but due to different scheduling things it just wasn’t happening. That’s when someone said something simple and completely enlightening “This is your moment to do what you want to do, to not miss out on something that’s important to you. So why don’t you go to Disneyland twice?” It completely rocked our world, it wasn’t even a thought, and yet it solved everything! So we came home and bought tickets for today! What’s happening is that we’re doing the ‘dream vacation’ staying in the hotel we’ve always and forever wanted to stay in, we’re doing three concentrated days, flying down (we’ve always driven), and it’s (again, for the first time) going to be just jess, the kids, and myself. This now frees us to still have our extended family Disneyland trip (that’s been moved as far forward as possible to May). If I’m sick during that time there will be less pressure to make that trip the “everything trip”, we’ll be able to allow it to be an important time with family, and it now frees us to anticipate that trip rather than dread missing it. We obviously cannot afford two Disneyland trips but people over and over have been incredibly gracious in caring for our family…and this is no different. Thank you to everyone who has and is continuing to make this stuff a reality for us…it brings me to tears… awkwardly as I’m sitting in bed next to my wife.
We love you all so much. From dinners that have already been brought, to money to send us to Disneyland, to notes, to text messages, and more. Not that I’m an expert on the matter but it’s been refreshing to hold onto such a huge number of appropriate feeling messages (my inbox is flooded with lots cuss words, prayers, and stories of hope…as it should be!). We’ve got no idea what the next few months look like but I do know that we’re going to both rely on many of you and ignore lots of people as we attempt to focus on fewer and fewer things. What a trip all this is! Who would have thought one year ago I’d be doing or writing any of this? And yet what a blessing it is to have the gift of preparation!
Ok, i’ve got nothing left…oh yeah, and I’ve kind of got to finish packing. Did I mention I’m leaving for Disneyland soon? Hey-Oh!

 

*  Lets be honest, that’s not true! I’ve always got something to say…it might just be that it’s not something wholly worthwhile to say!

Back Pain and Back Scans…

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My back has been hurting like hell lately. It always hurts worse during chemo treatments and then tends to slowly get better once I’m off the drug. But since last month (it’s been about exactly a month) my back has gotten progressively worse. It’s a combo of nerve pain from where the tumor is either growing and pushing on my nerves more (or where the inflammation surrounding the tumor is what’s pressing) and muscle pain caused by my back just being jacked up in general. Hence the reason I’m writing a blog at 3:45am. I’ve upped my Vicodin and my steroids in small increments to no avail at this point. The fear is that this is indicative of more rapid tumor growth…hopefully it’s just back pain right?

Today I go in for a CaT scan of my lungs. The hope is that there are no remaining complications from my pulmonary embolism (blood clots in my lungs) that I suffered back in July/August and that I can then be freed of my daily blood thinning medications. My last CAT scan was two months ago and showed that there were still some chunks remaining (my word, not theirs). The good news about having this test done is that I get to have steaming gravy poured down my body.

what?

Oh, I absolutely love the contrast that they rapidly force in your IV before imaging ’cause it literally feels like hot chocolate is being poured through the insides of your body (in a good way, not in a burning way) to the point that you often feel like you’ve wet your pants. Some find it disconcerting…I find it delicious.

Moving on.

On Tuesday I will go in for my next set of MRI scans. These will be the most extensive scans I have had since post surgery. Usually they skip my neck area and only sometimes do my lower back. But due to the emergence of two new tumors in my last scans they decided it prudent to scan everything in case of the emergence of even more new spots.

The good news is that I will not have to wait long for any of these results because the monthly Vancouver tumor board is on Wednesday and we’ll meet with my oncologist immediately following that board gathering. Please keep us in your thoughts and prayers as we lead up to that Wednesday morning appointment. Most of the MRI results have, in reality, been very ambiguous. There are really only three options that would tell us anything legitimate:

  1. Tumor shrinkage. If the tumors are smaller this would be epic and would be something to hold onto
  2. Massive tumor growth. If the tumors have grown in massive ways this would clearly be bad news.
  3. New tumor growth. If there are any new spots that did not previously exist this would be clearly bad news.

What, as it turns out, is not necessarily bad or good news is continued slight tumor growth (as has been the case in virtually every scan). One can assume that the tumors will be larger because either a.) they’re growing slightly because they’re a high level tumor that will never stop growing. Or b.) they’re growing slightly because there’s inflammation due to the fact that they’re successfully being attacked by chemotherapy drugs. So slight growth would be the result of either likely option and one cannot tell the difference between the two. In this instance we would just wait another two months for more clarity and continue to live in the constant ambiguity of not knowing.

Honestly at times I seriously wish that I’d know one way or the other. Do I have six months, six years, or sixty years. It would almost be refreshing in a way to know that I only had six months left because then it would give me a framework for how I should be functioning right now in life. At this stage in our journey I think both Jess and I would agree that the hardest thing is the constant and utterly crippling ambiguity. As nice as it might sound in a movie you cannot functionally live every day as your last. If I did I’d stop paying my school loan, I’d eat more greasy food, and I’d sacrifice time with others in order to be with my family (in my mind family includes both the biological and relational). Not knowing is horribly difficult and requires much…but that is what where we’ve been invited to live: in the mystery of the unknown.

Living in the mystery of not knowing is probably more of a gift than I am right now ready to accept. In six months I’ll probably write a blog about how we all live in this ambiguity–though we try to pretend otherwise…

But for now I’d love some answers!

Let you know on Wednesday.

peace.

Welcome Back!? Chemo, Surgery, Ambulances, Mangeld Toes, and More

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We got back from Hawaii late Tuesday night. Wednesday was a whirlwind of excited (and jealous) kids. Thursday was filled with meetings, appointments, and general catching up.

then.

Friday hit.

Friday morning Jess’ sister had surgery (second in a month). Friday night I started chemo. Friday night India got her toe smashed under my parents front door. Her and Jones were playing and chasing each other when next thing we knew India was outside screaming. From the window next to the front door my dad could see India laying flat on her back with her toe wedged in the shut door. The only thing we could think to do was to rip the door open. The girl was in pretty extreme pain and the toe was mangled to the extent that the four seasoned parents present were awkwardly shook up. To make a long story short, by Saturday and after a trip to the hospital (our wonderful medical care does not have urgent care nor are they able to do same day or, as it would seem, same week appointments), India’s toe was “simply” mangled and bone bruised but not broken (they don’t think).

Saturday and Sunday consisted of chemo, a housewarming party, our regular Sunday Community meal, Jess taking care of her post-surgery-sister, a kids birthday party, and India’s hospital visit for her toe.

Monday morning at about 8am as India was laying in bed something popped in her neck. She cried and screamed for about forty-five minutes and did not move her neck (literally) from that moment until this morning (Tuesday). Not knowing what happened nor the extent of the damage we were instructed by the advice nurse to not move her and that she needed to be seen by a doctor. So we called an ambulance. The paramedics were able to discern that it was most likely nothing having to do with the spine and was probably muscle pain. They were able to get her to wiggle her head just a bit, enough to give us confidence that she didn’t need to be shipped via an ambulance. We decided to give it some time, if it was just muscular in nature then we figured a kinked neck didn’t necessarily need hospital treatment. Then we started reading about tetanus symptoms (remember India had just had her toe shaved off by the metal flashing from a door and has not had a tetanus shot) and decided that maybe we should take her in! On the way to the ER we called our naturopath to get some advice and even though it was his day off he had us meet him at his clinic. At the clinic Dr. Zeff checked her out, gave her some magic homeopathic stuff, and ruled out tetanus. Still unable to move her neck and still in incredible pain we at least re-confirmed that it wasn’t some catastrophic bad thing. That night we took her into a chiropractor (he stayed after hours in order to treat her!) where he spent about an hour and a half working with her, helping her understand what was going on, and trying to help her remove some of the pain and gain back mobility. We couldn’t have been more impressed with him (we’ll see him again today).

The good news is that India woke up this morning with better movement, less pain, and more energy. Mom and dad on the other hand…woke up this morning exhausted and ready for a vacation. Hawaii anyone?

Here’s India’s take on the whole thing:

Once I hurt my toe it was so bad I cried and cried. And they had to lift the door up to get my toe out and pull it open and some of my skin pulled off. And umm once my neck got hurt as I was rolling in the blankets. And I thought it popped but it just automatically got hurt. The end.

Back from Hawaii and back to blogging

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I keep putting off writing this blog because I want it to be perfect. In some way I want to effectively capture with pictures that have been edited and with stories that have been shaped well enough to capture how wonderful our time in Hawaii was. But that ain’t gonna happen! Turns out when you’re gone for eight days life continues to move forward and quite a large pile of things to do builds up! Writing the perfect blog is losing out to other necessary and good things that top the to do list.

For those of you who do not know, Jess and I were surprised by her family with a trip to Hawaii (Oahu, where her brother is stationed). It was a last minute affair where we had less than two of awareness before we flew out. We spent three nights at a secluded resort on the rural/tropical side of the island where we were surprisingly upgraded to a room with our own private deck that overlooked the bay. Each morning we sat on our deck serenaded by roosters, splashing fish, and tropical birds of a thousand kinds. We spent those three and a half days on that side of the island and the older North Shore side. We ate lots of good food, watched sunrises together, shopped randomly, and even went to bed by 5pm one night (don’t judge me). Next we transitioned to staying at my brother and sister-in-laws home where we were able to spend time with their family. They took us snorkeling with sea turtles, we toured Pearl Harbor, we ate more good food, spent some time in Waikiki, and enjoyed being together.

Honestly I didn’t ever think I’d be a “Hawaii guy”–you know, the dude that comes home and always raves about it and talks about how he wants to go back…but, yeah, it was pretty fantastic. More than anything I got to spend time with my wife. If you called, texted, or facebooked me you were completely ignored (at least for the first four days). It was our time. No kids. No doctors appointments. No work. No hospitality. No housemates. No housework. Just us…and a lot of chickens and roosters (seriously, they were everywhere!).

I could tell you lots of stories and I hope they emerge over time. Stories of Jones’ jealousy, stories of my awkward buoyancy, stories of sunrises at garbage filled beaches, stories of monsoons, of scattered and dissolving medicine…good stories.

For now, here are a few quick and unedited photos from our trip. Glad to be back and I look forward to writing again.

Peace.

 

This is where we went snorkeling. So much fun! (aside from all the cuts on my legs from the coral! One of the pains of not having feeling down there!)

Good picture of the turtle...not a great picture of Jess...but come on, we swam with frickin' sea turtles!

The view from our deck!

It was nice to be able to kayak any time we wanted right in the bay at our resort

Signing Off…for a time

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Goodbye my friends, I’ll be leaving you for a week. I hope you survive without me…or more honestly I hope you’re around when I get back. Yes, that’s right, my wife and I are headed to Hawaii for a week! Thanks to Jess’ family we are being flown to Oahu for a full week of kid-free sun, sand, and relaxation. It couldn’t have come at a better time and we couldn’t be more excited.

It’s interesting how being sick (and everything that goes along with it) has both propelled Jessica and I toward each other and has made it more difficult to be close. In some ways we have greater closeness and intimacy now than we’ve ever had before while in other ways we are so consumed with the needs and necessities of life while simultaneously running on empty emotionally and physically that we have very little to give or share with each other. All that to say…Hawaii with my beautiful bride will be glorious and I’m choosing to not let blogging interrupt it (you don’t realize how genuinely hard this will be!).

So while I’m gone I’ll leave you with this glorious video: