The Truth About Catheterizing

I’m no expert. I’m not a urologist. I’m not a doctor of any kind actually. I have not been cathing for an extremely long time as some men I’ve met have been forced to do. But I am one of the few people who are foolish enough willing to talk openly and freely about the reality of what it means to self-catheterize multiple times a day with no end in sight. These are must my own personal observations, but they just might provide some courage for others who are put in this situation and they also will provide some measure of insight for others who may be voyeuristically interested. So here, without further adieu, are some of my own thoughts, struggles, opinions, and experiences with regard to all this mess of urination:

  • It’s ALMOST all mental— The pain and anguish associated with cathing is really and truly almost all mental. Up until the last week or two it still psyched my mind out to even think about doing the deed even though while actually catheterizing it was no longer that big of deal. In other words, the idea was and is always worse than the reality. It sounds terrible. It sounds terrifying. It sounds like the worst. But it’s not, it just really isn’t.
  • It’s NOT All Mental— Ok ok, while most of it is mental, it does hurt. I just feel like this piece doesn’t really need to be said. I feel like this piece is obvious and offers no new insight. It doesn’t feel good to stick about nine inches of tubing into ANY part of your body let alone something so private and protected. I don’t believe anything more here needs to be said, but it does belong on the list.
  • UTI’s Are No Fun— Bladder infections complicate everything. I believe that for a majority of the time I’ve been cathing (maybe all of it) I’ve had an infection. When the UTI is raging it makes cathing so so much worse (pretty much I’m referring to straight up pain and bleeding here). So do your best to keep as clean an environment as possible when cathing. Wash your hands lots when you’re getting ready to do it, wear gloves, sanitize, do whatever you’ve gotta do to be clean and to not allow extra bacteria to follow that tube down into the depths of your organs!
  • Know Your Tubing— There are different sized tubes, there are different types of tips to them, there are different levels of rigidness to the tubes, and there are tubes for different purposes. It’s valuable to know not only which kind you prefer but also what each type offers you. The smaller the tube the easier and less painful it is with the trade off being that it takes a whole lot longer to empty ’cause it comes out so much slower. The more rigid the tube the easier (I think) it is to push past the prostate (that’s the painful part) but it is, clearly, more rigid and thus a little more rough if you ask me. Anyway, you’ll learn which types you prefer OR you’ll live off samples like me learn to cath with whatever people give you! In the hospital, for example, they didn’t seem to know what they were doing so even after repeated correction they gave me a Foley catheter (the semi-permanent type that have deflated balloons spots at the end) that I eventually went ahead and used. It hurt a bit more. But I succeeded. Give me a lead pipe and I’m pretty sure I can figure it out.
  • Twist— A little tip: if you’re using a straight cath with no coude tip (a slightly upturned tip at the end) try twisting it while you insert it. It seems to work lots better. Just an idea.
  • Lidocaine is a Joke— Many people prefer to use numbing gel before cathing. And you can if you want…but…well, it only numbs the part that doesn’t really hurt at all. The most painful part is pushing past the prostate and ain’t no gel getting that deep in. If it makes you feel better emotionally…cool. But it doesn’t really do anything for you so I’d save your money for other things if I were you.
  • Relax— Part of what made it more painful early on (besides the raging UTI) was my stress level. My body would be tense and rigid, my breathing was intense and labored, and I did not have a relaxed demeanor whatsoever. Finding ways to relax your body is going to make it so much easier and less painful. Play some music, do some deep breathing, etc. do what you’ve got to do to chill and give your body a chance to play its part peacefully.
  • It’s All About Control— The reality is that self-catheterizing gives you control back. I don’t know what your context is (if you’re one of the people reading this and cathing) but for my situation the option to straight cath myself gave me back a measure of control when compared to having a more permanent bag strapped to my leg. As I’m learning to master this thing (and, no, I don’t think I have yet) I’m realizing that it’s giving me back a measure of control over my body and what I can or cannot do. This is a good thing (even if it is just an illusion) when due to sickness everything is feeling horribly out of control.
  • Catheterizing Robs Control— Ok, so to totally disagree with what I just said…this has been a really hard transition. Discovering that my bladder no longer worked was incredibly symbolic to me for how out of control my life/body had become. I no longer had anything to hold onto: I can’t even pee like a normal person anymore! What do I have left? Being forced into cathing really reminded me that I’ve got no control in my life left. I’m at the whims of my disease. This was a painful reality. Very painful. Very painful and very much something that deserves to be grieved. Not only is it ok to be incredibly sad if you have to cath regularly and for an unforeseen period of time but I think it’s ok to be mad about it too. This stuff sucks and it’s unnatural and it hurts and even if it’s manageable it’s not something you ever wanted to say that you had learned to manage! So, yes, you can do this AND yes, it sucks to have to do this.
  • Don’t Stop Moving— Another random and important tip: don’t ever stop moving. When you’re inserting the tube don’t stop inching forward. Ever. Even if you’re only moving ever so slightly, a millimeter at a time, don’t stop or hesitate for a second. ‘Cause it gets to a point where you question whether you should pause or back out and start again. Both are bad ideas. If you always inch forward then by the time you’ve thought through “should I stop or back out” you’ve most likely already past the small part that hurts bad and have entered into the spot that doesn’t hurt so bad. So trust me, don’t ever stop or pause. Just keep movin’.
  • Keep it at Home— If you’ve got the choice or if you can schedule it accordingly it is ALWAYS so much easier and better if you can do your business at home! Man does it get more difficult on the road! Regarding cleanliness and ease it is just so so so much better if you can keep it all in the house. Sometimes this isn’t a choice, but it’s definitely worth you thinking through your schedule (both your calendar and your urination routine) to see if you can be proactive in only cathing at home. Good luck!
  • Don’t Blog or Talk About it— ‘Cause that’s just gross. Keep potty talk around the potty please. I mean, seriously, who talks about this stuff in public? And who in their right mind talks about this stuff for the entire world and any stranger in it to read? Bad, bad, bad idea…and a little gross if you ask me (which you didn’t)

I’m sure there’s more to be said, more that should have been said, more that I could’ve said. There’s always more. My hope here wasn’t just to lose a few readers while popping up on a few new and strange Google searches. Instead my hope really was to bring some awareness to something that people just don’t talk about. I realize that in many ways this is a very private topic, and I did my best to respect that in my brief discourse, and I realize that private things often deserve a private setting to be talked about…but…well, I don’t have a great rebuttal to that aside from saying that I’m not always against taking the private and making it public.

Enjoy (but not too much ’cause that would enter into creepersville and that’s not the type of blog I’m trying to write here!)

Changes

A video blog on this is/was coming, but I’m having the hardest time uploading from the hospital.

Hmm…

Well here’s the idea–things change so incredibly fast. Have I blogged about this already? Well they do. On Tuesday I may tell you that I’m doing great, that my body is feeling good, and you might even see me up and doing dishes or something like that. AND THEN on Wednesday things can totally switch and I’m sick and miserable and deathly ill. The worst is when I tell you I’m doing terrible and then the next day things get better and you see me weeding the garden or something.

I often feel like a liar. And I promise you that I am. Just not about this.

The last week provides a great example. Following my first new chemo treatment on Thursday had you spent time at our house for our Sunday community meal you would have been part of the group teasing me because I was constantly falling asleep. Seriously, for about four days I could not possibly stay awake for longer than an hour at a time. In very awkward ways I would fall asleep in the middle of sentences, during conversations, or while eating. I was always tired and pretty much out of it for nearly a week. And then on Tuesday things got better. My brain worked again, I had a huge amount of energy, and I was up and around playing with my kids and helping my wife just like I’d prefer. It felt great and I felt great. This carried on into Wednesday as well. Wednesday was a great day…until  four o’clock. At four everything immediately switched. I took a short nap (’cause even when a guy feels like a million bucks that doesn’t mean he sleeps at night. You can’t have everything right?) and when I woke up I felt like I had a terrible flu. Fever, chills, body aches, headaches, numbness in extremities, etc. I felt absolutely terrible and within a few hours had to be admitted to the hospital.

Things change so quickly. One moment I’m fine and the next I’m in bad shape. And you just never know what to expect.

It’s disconcerting to say the least because it is a constant reminder of how quickly things may potentially turn as my body continues to digress from tumor growth. It’s very possible that in one weekend I could go from my current walking functionality to being permanently stuck in a wheelchair. We just don’t know.

Disconcerting.

And that’s just how things are, it’s just what we must get used to, and yet it is something that I’m not certain we ever will grow accustomed to.

So as you listen to me, as you watch our story both from near and far, and as you peer into our lives through the windows that we’ve readily opened up please be fully aware of the ch ch ch-changes that happen not only over night but often times almost instantaneously. Things are not always as they seem…at least not for long!

 

As a quick update to my health. They are keeping me in the hospital for a second night. I feel relatively good now but they don’t want to take any chances with regard to an infection (infections are kind of a big deal when you’re on chemo I guess) and in order to make sure they treat it right they need to wait for some specific tests that take 24 hours. So here I sit. But don’t fret ’cause I think i’m doing pretty good. Thank you all so much for your thoughts and prayers!!!

And as another quick update. Here is a link to the video blog that I referenced and was attempting to upload in the hospital. https://www.youtube.com/watch?v=yq2BM0u1Otw&feature=plcp 

MRI Results: A Few New Friends

It’s official: I’m dying.

Ok, ok, that’s true of all of us and it was true of me as much last week as it is today. It’s as true of you today as it was true of you yesterday. But once again we were reminded of the reality* of our situation, of the nearness to death that I am living, and of the seriousness of my illness. Being completely honest, those are not all things that i really need to be ‘reminded’ of because my body is constantly reminding me of those truths. It’s for this reason that six weeks ago the good results we received back were so disconcerting: they did not match what my body was telling me. This weeks results were quite the opposite.

MRI Results

Only hours before literally one of the best birthday parties I’ve ever had thrown for me the results came in showing that my original tumor (the one that shrunk by one centimeter last time) has stayed the same. This is good news. The bad news is that two new tumors have emerged inside my spinal cord. The smaller of the two is 1cm across and is in the base of my neck. The larger is a 1.5 cm tumor located in my middle to lower back (right where my bladder function is controlled ironically). Additionally the ‘sheath-like tumor‘ that surrounds my spinal cord has begun to thicken or constrict down near the base of my spine. It was great to be able to celebrate with the people I love and forget for a short period of time the reality that lay under the skin. Some of you drug the news out of me but for the most part Jess and I chose to enjoy the scenery and the company.

What does this mean?

It means that I’ve still got a nasty type of cancer that prefers to continually grow and spread itself in invasive ways. That’s the nature of a GBM. That’s just what they do. It means that my current method of treatment is not effective and we have the choice to start something new or to essentially give up on traditional medical treatment. It means that I met with my naturopath yesterday to talk about my oncologists suggestion of a new chemo. And, finally, it means that today we’re going in to initiate my new once-a-month chemotherapy treatment. For clarity sake here is what things look like: every two weeks I will continue taking the Avastin anti-body drug that I’ve been on. Once a month I will start a new chemo that will be potentially more invasive than some of the drugs I’ve done before. And simultaneously through it all I will be taking a specific regimen of herbs and supplements tailored to the medical treatment I’m receiving (something we’ve done since day one). The probability is that I’ll finally lose my hair, I’ve probably got a season ahead of me where I’m ever more tired than I’ve been lately, and I might be dealing with some more extended nausea fun.

Telling the Kids

The kids were looking forward (maybe ‘looking forward’ isn’t the best way to capture it!) to these results. After getting the ‘good news’ last time India was so ecstatic that daddy’s tumor was smaller that she quickly opened her worry box and let all of her worries float away “up up up into the sky like balloons so that they’ll never come back”. Jones quickly balanced that hopefulness with “Even with the good news, my worries aren’t floating away. They’re made of steel and they are not ever going to leave.” So we were worried about her gentle little spirit, worried that she’d be crushed. In the end, as we expected, it was the thought of daddy losing his hair that was most worrisome. And so both kids came up with backup plans for daddy. We’ll have a stash of wigs, of green eyebrows, some watercolor pencils to draw on angry eye brows, happy eyebrows, etc. If or when it comes to it they gett to have the fun and pleasure of cutting daddy’s hair at our friends salon–something that seriously piqued their interest.

The End

In the end I’m not sure quite where I’m at nor how I feel. I’m certain that whatever it is or wherever I am at I’m not ready to share it here. I am feeling fine–which is usually not a very connected or healthy place for me personally to be (I can be eternally fine and live in this fine place for a inFINEtely long time to the detriment of myself and others!) I do know that in many ways nothing has changed. These results have validated many of my new symptoms, they have corroborated what my body has been telling me for two months which in a strange way is quite comforting. So in that respect, from that perspective, nothing has changed. And while nothing has changed…we are still desperately looking for, praying for, and hoping for a miracle. It couldn’t come sooner if you ask me. But, again, our faith is in God not in his willingness or ability to heal me.

Here’s my final though about all of this. In the end Jessica and I are realizing more and more that all we’ve ever been given is today. It’s cheesy to say. It is so incredibly painful to practice in real life. And it definitely has the potential to be one of the most trite things an individual who is not connected to a person’s story can say to someone suffering or grieving–but in this life today truly is all that we have been given. Nothing more, nothing less. I want more. I need more. I have not been promised more…not in this life.

Thank you Jesus for hope in the resurrection.

 

*  Our choice is to live in reality as it is while simultaneously hoping and pleading with God for an alternative reality to enter into our story.

Medical Update: lots of questions–few answers

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 Gift of Good Test Results

This morning I invited everyone to pray for us and the MRI test results that we’d receive later that day (Wednesday).

Well, for the first time (as far as I can remember) our MRI scans actually provided some good news! Turns out that the original larger tumor that splits my spinal cord in two (as opposed to the cancerous tumor sheath encasing my whole spinal cord) has shrunk by a little over a centimeter. The doctors were all shocked and very pleasantly surprised by this news because it’s fairly unexplainable. There is not much precedent for the drug I’m taking to have such an effect.

Where does this leave us? Well, honestly, we’re still one tumor growth spurt away from death or major paralysis but we’re also hoping that this develops into a new trend that will continue. This leaves us in a holding pattern that’s much better than the one we were holding onto last week.

My children’s responses truly capture the tension that exists within me regarding how to respond to this very good news. When we shared with them the results India excitedly exclaimed “Yay! I’m emptying my whole worry box! I’m opening it up and letting out all my worries forever! Up they go into the sky. Pop…pop…pop…” Whereas Jones’ retorted “I’m not letting go of any of my worries! They’re all made of steel and they’ll never go away.”

One part of me wants to let go, celebrate, and feel like everything has changed while the other part of me wants to hold on, not get my hopes too high, and stay in reality (that my back is still filled with cancer). It’s that tension that I briefly wrote about this morning–what does living by faith look like?

For now we’ve been given the gift of good news. It may only last a month, it may last longer. We’re still operating on a 3-6 month time frame, but oh man is it good to hear some good news from those blasted MRI scans!