Cathing, Control, and Dealing with Disappointment

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?!

8 thoughts on “Cathing, Control, and Dealing with Disappointment

  1. I'm curious, if the steroids made things worse, why can you not go off them again. Sounds like a cath is required either way. Hoping for the best and praying for more things "positive" for you and the family.

  2. I read somewhere that the Psalms are 60% lamentation. Job, I suspect, would be considerably more. If life is real, and your's sounds like it, the percentage will wax and wane. I don't know you but I'm sorry for your suffering and I wish it would go away. May the LORD have mercy on you and your family.

  3. oh Ryan..we are just continuing to hold you up to God…praying for the Lord to grant a time of peace in all of this..love you and your family

  4. continuing to pray for you and your family. i can't help but think of our sweet boy as I read your post. in our son's last days during one of those "difficult" (in the middle of vomiting blood) moments he said to my husband, "dad, it looks like we've lost this battle with cancer. but we will still win the war."
    no matter how this story ends, your journey, through Christ we win the war. He get's the glory. In the end as my sweet boy would said "we don't have to worry about our future, because God IS our future." (he said this on the way to his oncology appt.)
    sending you and your family much love and prayer. still praying for a miraculous healing.

  5. Thank you for your candor Ryan. I am so impressed by your spirit, hope, and peace in the midst of the yucky stuff you're feeling.

  6. Ryan- I found you via Richard Becks blog,and am so admiring of how you share yourself and your jounney with such richness and fullness. I have heart issues and also experence those times of heaviness like when I needed cardioversion to shock my heart back into normal rhythem. Thank you for sharing your life and by doing so enriching all who read your story. I hope and pray you have joy and peace in the midst of the pain and illness. Sure sounds like you have a wonderful family who I know provide constant support.

  7. Dear Ryan,

    I have been folowing your journey via your precious Aunt Debra Tomlin. Your family and journey are being held close in my heart and prayers.

  8. Hello Ryan
    We don't know each other but your story has touched me in many ways. I have seen such a peace in you and your family and it is encouraging to me in my life. I want to tell you that I have prayed for a miracle in your life and that I know we all have our own path but you have brought so much light to what some think is darkness, you are a world changer just for that. I wanted to share these lyrics below of a song that I LOVE and maybe look it up on YouTube to listen, the song is powerful to me and has helped me through many hard times. I have been healed in many ways and I know that Gods healing is true, I also know that we all have our time. You in your heart of hearts know your destiny so I am not here to tell you what to believe but I truly hope the best for you and your family and I love your heart. Your all in my heart and prayers and thank you, THANK YOU so much for being such an inspiration!!

    "You hold my very moment
    You calm my raging seas
    You walk with me through fire
    And heal all my disease
    I trust in You, I trust in You

    I believe You're my healer, I believe You are all I need, I believe.
    And I believe You're my portion, I believe You're more than enough for me, Jesus You're all I need.

    You hold my very moment
    You calm my raging seas
    You walk with me through fire
    And heal all my disease
    I trust in You, Lord I trust in You

    I believe You're my healer, I believe You are all I need Oh, I believe.
    I believe You're my portion, I believe You're more than enough for me, Jesus You're all I need.
    Nothing is impossible for You, Nothing is impossible Nothing is impossible for You, You hold my world in Your hands."

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