Category Archives: Cancer

How to Create Dying Memories

Posted on by
13

So you’re dying and you want to make every moment count, you want to create amazing memories over your potential last few months, you want to cross things off yours or your families bucket-ish list, you want every single moment to be special and memorable. So you go to Disneyland…or at least we did are.

First off let me say that we’re having an amazing time. But secondly, and this is where I’d like to dwell, it’s not all it’s cracked up to be. Disney isn’t the problem–it’s as backwards to what we believe in as ever and as amazing and fun an experience as ever. The problem is that no matter how much fun you want to have, no matter how many amazing things there are to do, no matter how many people (surprisingly and in painfully gracious ways) give generously to allow you to do whatever your heart desires…you’re still dying of cancer. And we all know it. I know it. My wife knows it. And my children know it. We are not necessarily talking about it, but it’s there like a dark cloud. In fact, there have been a few moments when my wife and I realize that we seriously only found out and told my kids that I’m dying just a couple of days ago! It literally JUST happened. What this translates into is that my son Jones’ anxieties are at record levels (if you know him and the fact that he has an anxiety disorder you understand what this means), Jess and I are emotional messes, and India can’t function unless she’s sitting on my lap (on my wheelchair). The intensity is painfully thick…painfully.

So what do you do? How do you live in the tension between reality and ideals? Here’s what our meager attempt to allow this trip to be what it needs to be while at the same time trying to make it an epic experience in and of itself is turning out to look like:

  • No pressure. None. If we don’t hit up every ride, if we don’t hit up the best rides, if we miss out on something “important” we’re trying to remember that it. does. not. matter. Not one bit. The point is to be together. Translation: headed into day three we’ve done all of one ride in California Adventure, we haven’t seen any shows, and haven’t hit up three of the ‘big’ mountains yet. It kills Jess and I (who happen to be professionals when it comes to sucking the marrow out of DL)
  • Pretend that money doesn’t matter. We’re not excessive here (I’m not sure we’re physically able to practice this one considering it goes against every bone in our bodies!), but part of the freedom we’re trying to give ourselves and our kids is that they/we can order what we want for dinner. That might be normal for you, but rarely in my whole life have I ordered whatever I want. You share, you buy the smaller version, etc. Stuff doesn’t bring happiness and doesn’t healthily fill a void, but it is fun sometimes! So we’re letting the kids buy a few extra souvenirs, an extra churro here or there, we’re letting them buy those expensive balloons that we know will still be deflated by the morning regardless of cool factor and cost, etc. Translation: we’ve spent more than expected and I’ve eaten well. But lets not lie here, no matter how much you’re willing to spend…a grumpy emotional kid with texture sensitivities and high anxiety will not like anything you buy for dinner! One direction that we’ve chosen to take is to spend a bit more money on memory-type souvenirs such as artwork and photography…and I don’t regret any of this one bit.
  • Pay attention. Probably more than anything it’s this one that matters. The kids need attention, they want it, they deserve it, and as witnessed through their occasional outbursts they demand it. When it comes down to it they could care less about the rides or the food; what they want is our presence, they want to know that even though dad might be leaving he is still here right now. Translation: cell phones haven’t been out much. My legs are raw and have scratches all over them from kids sitting on my lap. Jess and I are fighting being grumpy because while the kids need attention we want distraction more than anything else! 
  • Be Gentle. This is where the rubber meets the road. Stress, intensity, Disney, death, sleepiness, and anxiety amongst other things leads to a context where we’re each needing more gentleness and grace from each other more than ever and yet are feeling less equipped to dole it out than ever before. If this trip is going to work (and it is) it’s got to be on the back of a gentle and kind spirit toward each other. Translation: I’m failing here painfully! Or at the very least I’ll have segments at different points of each day where I come to the awareness that I’ve failed miserably. Jess and I are working together, however, on gently reminding each other of our own intensity and lack of gracefulness in our responses to others (namely the two little ones we brought with us).
  • Be flexible…but remember to eat. Flexibility has been a huge importance…but what we learned today was that it can’t come at the expense of taking care of ours and the kids’ actual needs. There have been times that we’ve all been having such a good time that we forgot to eat a meal…which is fine unless your emotional rope is already a twisted, knotted, and tangled mess. Flexibility has allowed us to make it this far; flexibility coupled with proper self care will get us home in one piece. Translation: I think I already made this one.
Don’t be fooled, though, this trip has been magical thus far. No joke. Staying at the Grand California Hotel has been one of the most amazing travel experiences of my life. No joke. My kids love it and would often prefer to hang out on the hotel’s premises instead of going to the theme parks. When we showed up on the first day and greeted my children by name at the door only to quickly give India a signed photograph from a handful of Disney princesses she not only beamed and giggled like a school girl but then turned to Jess and said in the most whispered and sacred voice that can’t be captured via blogging “…mommy…” it was if it was all she could say. Beautiful. Watching Jones go through Grizzly River Rapids with his incredible schemes for never getting wet (that at this point have worked 100% of the time) is so funny and so ‘Jones’. Jess and I keep looking at each other and wondering how we were able to go on this type of trip. We feel incredibly lucky blessed.
I guess what I’m trying to capture here is that I think the collection of ‘last moments’ that we’ll be experiencing over the next 3-6 months (though I’m eager to be completely off in these projections! I’m looking forward to being made a fool when 35 years down the line I’ve got to pay all of you back who are/have helped to make this trip happen) will not be defined based on context, money spent, food eaten, or any other externals. Don’t get me wrong, they are incredibly important. They are, they are very important, hence the reason we’ve got a growing list of places that we would like to go to over the next few moments. But that simply provides a memorable context, they DO NOT define it. It’s the raw knees from kids sitting on them, it’s in the moments of grace and gentleness, it’s in the conversations that happen, the games that are played together, the laughing and crying that happens together, and the “ordinary moments” that will in the end create the extraordinary moments that we are all craving.
Translation: I’m making all this up and I can only say that I think this is what I think. This is my first attempt at all this (my first attempt at having 3-6 months to live). I’m hoping that this is just a trial run and that I’ll get another shot at this later (I’m shooting for having 3-6 months to live in 30 plus years). But until all that’s made clear I’ll just keep trying and keep typing along the way.
Thanks for reading.

A Poorly Written Update

Posted on by
9

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!

Talking to the kids about death

Posted on by
72

Lets get the good news out of the way: brain scans are good and clear.

While conversing with my doc about the brain scans we went ahead and asked her a few more pointed questions…and essentially here’s where we’re at.

My time is short. The moment that Jess and I have talked about in theory is now on us where we’ve got to live as if I only have a few months left…because unless some drastic healing happens (which is ALWAYS possible) I only have a few months left.

It hurts to think about.

Even more painful, however, was to talk with our children about it today. We all sat on the bed, the same bed that we sat on nine months ago when we told them that I had cancer, and told my children straight up that their daddy was dying. Mom, dad, and India sobbed. Jones attempted to understand it. India simply said “daddy I don’t want you to go” and then she curled up in Jess’ lap and cried with us for about twenty minutes. Jones’s first response was to yell “No!” with quite a bit of emotion only to be followed up with a really interesting and clear decision to not be emotional about the matter. He wanted to talk about heaven, about cremation, and about my new cancer treatment. He drew pictures of me being buried, of me ascending to heaven, of my new home in heaven, etc. He wanted to know if he could bury me with some of his Legos; he had lots of random (and funny) thoughts. Eventually he and India transitioned into caretaker mode. They picked every flower that they could to give to me, they created a prayer space in our backyard to pray for me, and they did sweet things like getting me water and snacks. Jones even offered to take over Grassroots Conspiracy for me (he also suggested that Jess remarry). Here are some quotes from along the way:

  • “Dad, do you want your scull and dead body to be burned up or buried?”- Jones
  • “Just about an hour ago I was cursing cancer. I was saying things like ‘stupid cancer, I hate cancer’ these were the words I was using to curse cancer…But what if I said ‘you stupid fuck cancer?’ I mean, i wouldn’t say that ’cause it’s bad because it’s combining two bad words ‘fuck’ and ‘stupid’…but, you know, it’s just how I feel.” -Jones
  • “Which graveyard is daddy going to be buried in?” -Jones
  • “Dad, have you made out a last will and testament yet? Because I’m wondering who you’re giving your Nook to. Because…I like to read…and it kind of fits me.” -Jones
  • “I’m going to miss you dad when you’re in heaven.” -India
  • (after drawing a picture of me in heaven with God she then drew a picture of me with a penis…and then said…) “Well I sure knew that would cheer you up! I think myself so cute and cheerful!” – India

The rhythm that this cancer seems to have owned both before and after surgery, before and after radiation, daily chemo, and now monthly stronger chemo is to have a month or so of rapid growth followed by three or so months of inactivity and stability. If this pattern continues then we can anticipate that we’ve got about three to four months of stability where we’re at and come August there will be a period of new tumor growth. The major problem now is that there’s very little space for my tumor to grow anymore! There’s very little left in my central nervous system to be taken over by cancer besides my brain and the continued strangulation of my spinal cord. So new growth essentially implies death or complete paralysis.*

There’s still hope, there’s always hope. The next set of drugs that we’ll most likely try isn’t some bottom of the line last ditch effort–it’s a good option that has a decent success rate. Additionally we’re continuing our constant work with an amazing naturopath, dietary stuff, and all that jazz. There’s always hope.

But (and yes, there is a but). But it has come to that time where we have got to adjust our life to the new reality (always hoping that this reality is not what comes to pass). When you’ve only got six months to live what do you do? Who do you spend time with? How do you spend your money? How does one leave a legacy behind? What things do I need to stop doing? What things do I need to start doing? Ahh, so many questions! And, honestly, all I can think about is how few memories I have of when I was four years old. Will my daughter even remember me? The need to both create memories and to spend time chronicling stories and thoughts via letters, videos, etc. seems to be of the utmost importance.

Anyway, at this point I can see that I’m rambling. I obviously have so many thoughts that I’m  trying to understand and I’m using you as a way to process through them. Thank you for that gift.

Again, there’s no good end to this blog. It is what it is. I do not grieve for myself–I have full confidence that I’m off to bigger and better things with the man upstairs. But I grieve painfully for and with my family. This sucks. And while we all knew that this would/could be a part of our story…I don’t think we could have ever imagined what it actually feels like to be here in this moment…and it…well…it’s no good. Keep my family in your thoughts and prayers.

 

* Much of this paragraph comes from Jess and my assessment. The doctor’s simple response was that time was very short and as an extension of that she adamantly said that we needed to move our family Disneyland trip up from June to…as soon as possible.

MRI Results…

Posted on by
44

The preamble

In the last three weeks there have been a host of new symptoms developing in my body. I don’t know if I was ever fully aware of how long the list was until we actually wrote it down in preparation for today’s appointment with the oncologist.

  • Terrible night sweats and hot flashes throughout the day
  • Creepy body spasms that happen as I sleep
  • Random swelling in feet, hands, face, and legs
  • Random tingling/extra numbness in legs or feet (different than my ‘normal’ leg/feet numbness)
  • Almost daily hot and throbbing headaches that last only about thirty seconds
  • Debilitating back pain
  • And some issues with urination and such that I won’t talk about extensively here!

So we expected some bad news…in fact, we almost hoped that there would be some kind of explanation for the developing symptoms. What we both genuinely expected was that the lower new tumor had grown significantly. This wasn’t the case.

The tumor update in all it’s terrible glory:

At this point in time virtually my entire spinal cord is surrounded by a ‘tumor sheath’. I don’t currently have the actual vertebrae count, but it is most of my spinal cord and it has a layer of tumor around it and the best way I’m finding to describe it is with the word sheath or casing. Additionally there is a clear tumor mass where my original surgery once was. (to clarify this point, up until now they have been able to identify that there was a growing mass here but it could be tumor, it could be radiation damage, or it could inflammation. Today, for the first time it is very clearly and undeniably tumor growth) So we went from one tumor four months ago, to three tumors two months ago, to…well, I’m not even sure how to categorize where we’re at now. One giant tumor who is attempting to strangle out my entire spinal cord.

Treatment options

This is pretty radical growth in only a two month time period and necessitates changing our treatment approach.

Regarding treatment we will make a decision within one week. We need to move quickly but there are two factors that inhibit this. There are quite a few potential clinical trials that are very reliable and very hopeful (the reality is that clinical trials are not what they once were even a few years ago. They’re much safer, more successful, and more reliable than they’ve ever been before.) but a clinical trial would require waiting about a month to start…and we’re not sure we want to wait that long. The next, and likely option, is to use another drug called Avastin. This drug has been very valuable for central nervous system cancers and is not a bad option to pursue. Regardless it is sad to see one more thing crossed off our list of attempts:

  1. surgery
  2. radiation
  3. daily temodar (chemo)
  4. stronger monthly temodar (chemo)

The second factor is that we’re still waiting for results from an emergency brain MRI that I had done today. Somebody along the way goofed up and I didn’t get that piece of the scan done prior to our appointment today. So now we’ve got to wait until my doctor gets the results and calls me this evening with more information.

Where we’re at

I wish I had a good answer for this. I wish I had something inspirational to say…ok, lets be honest, I could very easily drum up something inspiring right now, I’m pretty sure of it. But I don’t want to. I don’t want to downplay just how shitty this news is. It is. It’s just terrible news. This doesn’t mean that I still don’t have hope that healing can happen. This doesn’t mean that I don’t believe that God is and will continue to tell a beautiful story in my life or death. This doesn’t mean that I’ve lost hope. It simply means that I’m sad and I don’t want to write that off, I don’t want to artificially push through it, I don’t want to disengage my emotions, I don’t want to do a disservice to the reality of where we are because I truly believe that if I’m unwilling to recognize hell for what it is then I’m less able to recognize its transformation into goodness when/as it occurs.

Pray for us as we talk to our kids about it. They knew that daddy had scans today and so we’ve made ourselves accountable to share with them results.

Thank you for your love and support.

peace.

Looking back while leaning forward…and waiting for results

Posted on by
14

Today we’ll meet with my oncologist again. At this very moment she’s meeting with the local tumor board, discussing my MRI scans from yesterday. Who knows what we’ll find out, each time we’ve gone in for results we’ve entered with certain expectations that are sometimes accurate while at other times are incredibly far off. We’ll see what happens today!

Looking back over the last year here’s our journey of expectation as best I’m able to remember or capture it…

  • When my only symptom was drop foot I assumed I had a strained ligament or something of that nature. I didn’t even tell Jess ’cause I genuinely assumed it was nothing. Eventually when I saw the doctor she was baffled regarding what was wrong (because of m lack of other symptoms at the time) and ordered an MRI just ‘because’
  • Once other symptoms developed (namely some constant back pain and some leg numbness) I went into the chiropractor to get it worked out. I remember my mom and my wife trying to massage the points of pain in my back…turns out you can’t massage away a tumor…I don’t think!
  • At my first MRI, done at a second rate little storefront office, they stopped the scan halfway through because there was a ‘bundle of nerves’ that they needed a better look at. They sent me to Clackamas to a stronger MRI machine to take a better look. I had no concept whatsoever what a ‘bundle of nerves’ meant or could mean and the idea of a tumor was still not in my mind.
  • While it was supposed to take a few days to a week to get the results back, I got a call that night saying I needed to meet my doctor the next morning. At this point it finally sunk in that something more serious was up. The doctor shared with me that I had a tumor in my back but that she didn’t know much else ’cause it wasn’t her specialty.
  • It was not until a few days later that we discovered that the tumor was, in fact, encased inside my spinal cord. We learned that it could be one of three types: a benign and self-encapsulated tumor (90% sure that it was this one), a cancerous tumor that was self-encapsulated and easy to remove (9% chance of this one), or that which we don’t speak of (no seriously, this last option was so bad and so rare that they saw no point in talking about it). So at this point I anticipated going into surgery and coming out tumor free. Cancer was not a part of the story.
  • Post surgery I discovered that the tumor was most likely benign but it was not self-encapsulated and therefore impossible to completely remove. My friend made me a shirt that said “Still got it!” In my mind cancer was still not a part of the story.
  • Only a few days before we left the hospital that the surgeon sat down with us and told us that I had cancer. We had no idea how bad the cancer was, but for the first time I realized that cancer was a part of my story.
  • Waiting for pathology reports was a frustrating experience. Turns out its more of an art than it is a simple science experiment or test. The first pathology report tests said that I had a stage four astrocytoma (a glioblastoma or GBM). I knew this was bad but I’m not sure it sunk in how bad of a cancer this was.
  • My first post surgery MRI revealed no tumor growth or metastasization. I remember being very excited abou this. 
  • A while later the Mayo Clinic changed their minds and downgraded me to a stage three cancer. Great news! At this point the expectation was that the daily radiation/chemo would get rid of the cancer completely but that it would return again sometime later…only to be killed again…so on and so forth.
  • Squiggles were found in my brain. We didn’t (don’t) know what this means, they also refer to them as ‘artifacts’ but essentially they’re two dimensional lines in my head that are not tumors and might be nothing…but they’re there. The brain surgeon isn’t worried…but one can’t help but think about the fact that they’re there.
  • The next MRI’s reveal that my tumor has grown. The original GBM (bad) diagnosis is reintroduced and affirmed as the more accurate cancer identification…crap.
  • Due to unmanageable back pain in December I went in for an emergency MRI that revealed some more slight tumor growth.
  • The next set of MRI’s were the worst. They revealed two new tumors in my spine. They’re tiny but they’re there. The immediate implications of this is that it further solidifies my GBM diagnosis and reveals the reality of what a GBM tumor can do (grow).

I’ve left out lots of pieces, lots of small parts of the story are missing due to my forgetfulness, or the fact that I’ve got to get my kids up so we can get them to school so that I can go get these damn test results so that I’ll have something to blog about later! (that last part was a joke…kind of).

It’s been a wild ride thus far. Personally I’ve found myself to have swung from genuine ignorance, to willful ignorance, to depressing awareness, to hopeful awareness, to numbness, to…well, to wherever I am now.

The tumor board should be finishing their meeting in about forty-five minutes to an hour from now. They could be looking at my new scans this very moment. I wonder what bullet point I’ll be adding to that list…