Cathing, Control, and Dealing with Disappointment

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There are some pretty awesome things about having a Foley catheter, i.e., about having a bag of my own urine constantly strapped to my leg.

  1. I can pee during virtually any conversation, at any moment, in any context…and you’ll never know…except that for some reason I take great joy in telling people about it (right Dwayne?)
  2. I no longer need to get up five times a night to empty my bladder.
  3. It is keeping me from getting additional UTI’s because it’s keeping my bladder from constantly having urine stuck in it.

In general, however, this is not the next chapter I wanted to tell in my story.

It happened like this: over a period of two weeks my bladder was scanned four times after I attempted to ‘clear’ it. Each time, and progressively worse each time, there was still a significant amount of urine remaining in my bladder meaning that a catheter was a clearly necessary evil. To clarify the story even further, on Friday I went back on steroids in hopes that it would reduce inflammation in my spine that was possibly causing the increasingly poor bladder function. Returning to the ‘roids, then, would keep me from having to go the route of a cath again. But on Monday night, when we went to the ER because of some pretty extreme stomach and chest pain, it turns out that post-urination there was a significant amount of urine still in my bladder (900cc!)…and the worst part was that I felt little to no pressure telling me as such. Not good.

Not only did things not improve when I went back onto the steroids but they got worse! So I got a foley cath put in (one with a bag) and most likely tomorrow (Thursday) at my urology appointment they’ll train me to start self catheterizing three times a day (draining it with a tube that you then pull back out).

Here’s the thing–as much as I’m not looking forward to the pain of self cathing, it’s not the physical pain that I’m grieving most right now. The best word that I can find to describe what I’m feeling right now it is disappointment.

I’m disappointed. Incredibly disappointed. Let me attempt to share why.

I think that unconsciously I had made my battle to get off steroids and to have control over my bladder and bowels something of great significance. In a sense they were my last stand, the last place in my physical body where I could have victory and some semblance of control. (Control is what we often seek especially when it comes to sickness and disease. Cancer makes us feel as though life is out of control and I think it freaks us out in a very very deep place within us both as victims and as onlookers) On Friday I was willing to give up on one of my final battles (going back on ‘roids) under the hope/assumption that it would lead to victory over the other battle (the bladder). In the end I lost both. And in many ways it honestly makes me feel as though I’ve got no other battles to fight.*

Going back onto steroids was disappointing. It means that my body is going to continue to get larger regardless of food intake or exercise. It means that the acne rashes will continue to cover my body, the stretch marks will continue to color my body, the nerves on my tongue and over much of my skin will continue to wig out my body, and my sleep schedule will continue to be affected. Going back to the world of catheterizing is utterly disappointing. It’s a painful process done multiple times a day, it’s a process that takes a long time, that is invasive to a life that already feels painfully shut down regardless of my preference. More than anything it’s something that constantly reminds me of the digression of my body–I’m losing. I’ve done everything I can do, I sacrificed by going back on ‘roids, I ate the right stuff, I drank the water, sipped the juice, I got acupuncture, swallowed the vitamins and herbs, I prayed, I wished victory, I envisioned it, I did all you can do and lost.

I’m disappointed.

The Bible is full of laments. I don’t have the statistics in front of me, but a pretty significant portion of the Bible can be considered a lament of some sort. In fact, there are many points that not only capture the lamentation of the people of God but the lament of God himself. Many of the laments found in the Israeli songbook known as the Psalms end with or include a piece of hopeful poetry. For example in Psalm 5 we read:

Listen to my words, Lord,

consider my lament.

 Hear my cry for help,

my King and my God,

for to you I pray.

(continued later…)

 

Surely, Lord, you bless the righteous;

you surround them with your favor as with a shield.

But there are also a whole pile of lamentations that do not end with ‘good news’ of any kind but end awkwardly in the angst, sorrow, and pain of the lament itself. If you’ve read many of my blogs concerning my family’s journey in fighting cancer you’ll notice that most of them end on a point of hope. That’s just how I tend to view the world: through rose colored glasses…and I think that’s accurate to the story God is crafting in my family’s life. I really do see our story and my potential death as a good news story. But honestly I don’t feel like doing that today. Even though I’ve been lucky to be saved from my own moping around the last couple of days due to an amazing wife and some incredibly fun housemates who have brought me to laughter and who have allowed me to forget I’m sloshing around in my own urine on my leg–I’m still not done grieving this one.

I’m fairly certain that most of my blogs end in an implied ellipsis. Very few, if any, end in any other format. And this blog is no different. I’m sad and I hope that the next few weeks bring about a new chapter to this story. Between two hospital visits, debilitating headaches, some vomiting, surgery, multiple visits to the urologist, chemo treatments, sever dehydration, sever constipation, multiple catheters, a leg that’s not working as well, stomach contractions that won’t stop, lack of sleep, and two UTI’s over the last month I am ready for a different chapter to this story to emerge. This blog demands an ellipsis because any other punctuation would be too painful. There’s no better punctuation to capture pain, frustration, or in this situation: my utter disappointment.

… … …

* Please walk with me through this ‘out loud processing’. I realize that it’s less about these battles and more about the ‘war’, that it’s more about beating cancer as a whole. I realize that, as I’ve clarified many times over, control is only an illusion. AND SO as I think through this out loud with you please do not get hung up on the process itself and instead know that I’m sharing a journey. I’m not attempting to capture a ‘right and true’ way to see sickness and control. Nope. I’m processing through how this makes me feel, what questions I’m being invited to ask, and what losses I’m being invited to grieve. Don’t get lost in the journey ok?!

They Need Your Money and/or Your Time!

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Folks these people/organizations need your time and money! Don’t miss out on the opportunity to be a part of these great things. You’ve probably seen me post about this stuff on Facebook. But just in case you haven’t let me make a quick run down on some of the great stuff going on downtown that you should be a part of this Summer.

Compassion Vancouver

Compassion Vancouver is a one day health care event that happens here in downtown Vancouver at Washington Elementary. They focus on providing free medical, dental, vision, and chiropractic medical services as well as offering a great lunch, a social service fair that will connect you up with all sorts of opportunities all across the ‘Couve, a free childcare program so that while you’re getting your teeth worked on you’ll know your kids are safe, and all sorts of other nuts and bolts they toss in as well (dog/cat care, bike repair, etc.) If you want to support CV financially I suggest you do it here: http://su.pr/7Phebv and if you want to volunteer you can do it here: http://su.pr/5mv4sQ and they need help with both!

Coop Du Jour Tour

The Coop Du Jour Tour is an awesome neighborhood event that you shouldn’t miss. It’s a time where any person in the downtown neighborhoods that has chickens can choose to open up their backyard to show off their coops and chicks. It’s more than about chickens though. It’s one of those incredibly rare moments these days where you get to meet and converse with neighbors and new friends in your backyard. These moments just don’t happen any more! So if you live downtown and have a chicken coop you should (quickly) think about putting yourself on the chicken map by contacting them via their facebook account. If you simply want to walk/bike/drive the tour on July 14th then you can pick up a map for $15 a family or $5 a person at Mint Tea, Neighbors Market, or the Vancouver Food Co-op. Oh, and all the proceeds go toward the Hough Foundation and to support our family.

Kiggins Fundraiser for Ryan Woods (foundation)

On July 17th at Vancouver’s historic Kiggins Theater there will be the second annual Ryan Woods (inspired) fundraiser. I say “annual” because it’s going to now happen every year regardless of my health, regardless of whether I beat cancer or die from it this fundraiser will continue under its own 501c3 to continue to bless the downtown community. It will happen every year and will continue our dream of a transformed downtown life that is from the ground up (people-centric). You should come not only because it’s going to be amazingly fun (they’ve got some amazing music lined up and Kiggins is an awesome venue these days) but also because there will be a killer silent auction, and it’s the beginning of something special I think that is much much bigger than me…and I really like that. Oh, they’ve also created a great raffle that has prizes such as two first class round trip tickets with Delta among other great things. You can check out the prizes here: http://su.pr/28kZSc and you can purchase tickets at Mon Ami Cafe, Yogurt Time, and Vancouver Pizza Co..

The Mighty Bowl

Finally I’ve got some good friends that have opened up the first new modern foodcart in Vancouver.* Not only is their food incredible–rice and bean bowls/wraps and fresh fruit smoothies, but they’ve done things right: they have recycling available at the cart, they use as much local food as possible (and most of it is), and they’re local to the Nth degree from the names of their drinks (named after neighborhoods) to the uniforms (local t-shirts). You can read about them from The Columbian here: http://su.pr/221T0x. The Mighty Bowl needs your support, you’ve got to go eat their food, and tell your friends about ’em. To cooperate with Vancouver’s strange rules they’ve got to be mobile and in a different spot on regular occasions–so follow them on Twitter, or keep track on Facebook, or keep up via their website. Oh, and did I mention that it’s incredibly cheap? Yeah, nothing costs more than just a few bucks–I think nothings more than $7. Incredible.

 

* I say “modern” and “new” because there are some foodcarts that have been around for years and years that were grandfathered into the state/city/counties new rules and regulations for foodcarts. Since those new rules and regulations have been in place absolutely no foodcarts have been able to do things correctly in order to not be shut down by the city. The MB has worked hard to do things right and to (hopefully) pave a path for a continued movement.

Ignorance is Bliss

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I’ve thought about posting more on Facebook. I’ve toyed with the idea of sending more status updates into the cyberworld that attempt to capture how I’m feeling, how my body is doing, or what my current health status is. But in the end it always feels a bit contrived; it feels like I’m trying to evoke emotion from my virtual friends, and I just can’t bring myself to do it…and I honestly think we’re all the better for it. Adding to it, I also don’t want my identity to be utterly and completely wrapped up in my health status–though at times this feels like an impossible task–I am not my disease.

Even further, if I were to post constantly about my health the reality is that in some ways we’d all be better off. Because ignorance is bliss. Seriously. It is. Right? You’d treat me differently if you knew that I hadn’t been out of bed until ten minutes before I was supposed to meet you for dinner and that twenty minutes after we parted ways I was throwing up in my bathroom toilet. Things would feel different if while sipping coffee together you were aware that my no-no private areas were covered in a burning and infected rash that makes it difficult to walk or move. You’d see me a bit differently if I let you know the depth of my constipation, the severity of my headaches, or the discomfort that my skins heightened sensation brings. I could go on but I won’t…because that would defeat the whole point (and it would probably get even more awkward than it already has!).

The point is that it’d get really old. You might disagree with me because you’re a nice person, but the reality is that for ninety-five percent of you out there it would get really old if every time we sat down together or on every other Facebook posting you were hearing about my ailments. But it would be practically useful wouldn’t it? Isn’t there a level of honesty that’s lost when we’re together and you don’t know what I’m carrying?

Ignorance is bliss.

Right?

Ignorance might not only be bliss but it might also be necessary…and I’m not sure that’s a bad thing. Isn’t this how things generally exist? Isn’t it the reality that I don’t usually know the stuff that you’re carrying when we get together? At times you’ll share about your mental, spiritual, or emotional baggage that you’re carrying, but in general this stuff doesn’t come up and I’m also functioning in ignorance. Is it necessary? Must we live in ignorance in order to function effectively or are we settling for a lesser form of relationship when we do this?

Honestly I’m not writing this blog as an expert or as someone with answers to the questions that I’m raising. Rather I’m writing this as someone who is living in this mess along with you and is genuinely wondering if this measure of ignorance is avoidable, if it’s healthy, if it’s a necessary evil, if…I don’t know. What I do know is that I’m not going to post my constant ailments, I’m not going to lay out for you over coffee how many hours I did or didn’t sleep last night…well…not unless you ask…because unless you want to step out of the peaceful word of ignorance I’m not going to force it on you. But if you ask, if you want to step into that world I am glad to open myself up to you and I am more than willing to step into your world as well.*

So ignorance is bliss for certain–but knowledge just might be even better…right? Maybe?

 

*  The irony, I guess, is that this requires me to ask you now doesn’t it! So…how are you? Hmm, I’m going to have to develop a better question than that. I guess next time we overlap at coffee or somewhere else I’ll try to practice…unless I happen to want to dwell in ignorance that day…or did we decide that ignorance is evil?

Medical Update: lots of questions–few answers

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Spent nine hours at the doctor yesterday. Spent a few hours at my oncology clinic and spent a few at the ER. During those hours they filled me with lots of fluids, lots of drugs, did lots of tests, and sent me home feeling much better than when I had started…and within two minutes of being home–after not throwing up for nine hours–I spewed into a metal bowl while laying in my bed. That always happens doesn’t it? Ugh, I hate that! But here’s the story of what’s going on.

For eight days I’ve been sick with debilitating headaches and nausea. Essentially for those eight days, every morning I’d wake up with a pounding headache. If I stayed on my back it wouldn’t hurt so bad, if I stood up the pounding would be so intense that I’d have to hold onto a wall to keep from falling to the ground. The first few days of being sick we found that the symptoms would begin to disappear close to one or two in the afternoon. But as the days went by the symptoms began to last longer as they also increased in severity. The nausea turned to vomiting and the headaches started to last all day and eventually all night.

That’s when we called my oncology clinic to get some help. They suggested that much of what I was experiencing was from dehydration, so they called me in for fluids.

Simultaneously as all this is happening I also went into the urologist because of my chronic UTI’s. And it turns out, wonderfully*, that when I urinate I am not fully clearing my bladder. This is bad news ’cause essentially this left over urine is a breeding ground for infection and cannot be allowed to stay. The solution? Straight Cathing. Or to say more clearly: learning to drain my own bladder two or three times a day by inserting in a catheter, draining what’s in there, and then ripping it out. Two or three times a day. Self Catheterizing. Ugh. The good news is that I talked the urologist into giving me two weeks to see if I couldn’t ‘figure it out’. He reassured me that there’s nothing you can do if your bladders not working and I reassured him that I’d still like the opportunity to get it fixed. So I was essentially given two weeks to learn to clear.

Ok, back to being sick. The fluids helped with the nausea but they didn’t touch the headaches. At all. So they sent me to the ER to get my head scanned.

At the ER, to make a long story short, my head scan came back clear (insert celebratory remarks here!) which still left us wondering why I was having headaches. My bladder issues got worse leaving us no choice but to do a straight cath to drain it in hopes that my bladder will start up working again. In the end the ER gave me a few new drugs to try and we decided to go back on the ‘roids in hopes that the reason my head hurts and the reason my bladder is digressing is because there is inflammation in my spine that the steroids were reducing and that is now (now that I’ve been steroid free for a few weeks) putting pressure on the nerves going to those areas.

So where I’m left now is with the blessing of celebrating a cancer free brain while grieving the loss of about a week and half with my kids, my wife, and my community. We’re still not completely sure why I’ve been getting headaches and we’re still not completely sure if my bladder is fixable or not.** Regardless, here I am, up early on a Saturday morning with only a tiny little hint of a headache and no nausea. Here’s hopin’ that today’s a new day of health and healing.

 

* Please note the sarcasm here

** I have not taken the time here to share the different things we’re doing to get my bladder working again. If you have advice or insight into this we’ll gladly receive it, but more often than not people share it under the assumption that we’re not doing anything beyond what’s been typed or shared. So please know this isn’t the case.

The Baddest Video of ’em All

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This stuff is just too funny to not pass on to the general public.

First off, somehow my wife stumbled across this stunning website that was created by a 39 year old artist. There are no explanations–in fact there really are no words to capture how…how… intriguing this blog is.

Secondly, and more importantly, these videos are absolutely amazing…