Dating my Children

Included on my list of “in case of death get these things done” was to take each of my children on a special date. I wish I were that dad that did this often, that had a practice of taking my kids on dates all the time. But I’m not. My dad and mom would occasionally take me and my sisters out on dates and they are very special memories for me.

The goal was to create a moment, a moment that would last a bit longer than the date itself. So I made sure that each of them took a camera with them and promised that if they capture the date on ‘film’ I would make them each a special video.

Each of them started off their morning with flowers, Tictacs (why? I don’t know), and a special card from me.

For my date with Jones we started off with a few games of bowling, followed up by all you can eat crab at Salty’s, and ending with ceramic painting. For my date with India we began with do-it-yourself pancakes at Slappy Cakes, followed up by pedicures together, and finishing (like Jones) with painting beautiful ceramics on main street.

As far as the kids were concerned the days were wonderful and each were left wishing that we could do more. It left me wondering why I didn’t do this kind of stuff more often and it left my wife wondering when she gets her turn (a valid question!).

Below are my feeble attempts at creating videos. You’ll notice my video editing skills are not that great…but hey, neither are my kids’ photography skills! So take that!

Take ’em a Meal

I’ve said it before and I’ll say it again, one of the most difficult things in this whole cancer journey has been learning to be a recipient of people’s generosity. It’s just hard to feel like a sucker–like someone who is just sucking the life of those around you. It’s hard to be humble enough to willingly receive a gift with a simple “thank you”. Very very difficult.

And yet it’s a beautiful journey to be invited into. It’s a journey that I think all of us need to be invited into from different avenues. What I mean is that some of us do not find the challenge in being a grateful recipient because we’ve been in that role for most of our lives and therefore play it well. Some of us need to learn a posture of thankfulness ’cause we’ve gotten used to the receiving. Others need to learn the posture of thankfully receiving because we’ve taken a posture of authority our whole lives. We’ve often even mistakenly placed ourselves as the rider on the white horse who comes to rescue those three feet below us. Some of us are just prideful. Some of us are just lazy. Some of us are both. And I’m sure there’s one or two of you who are neither.

This week, as we’ve been movin’ rooms around, we had many people offer to help. It was wonderfully overwhelming. In the end it was easier to have just one or two people come to do the work, but it was yet another example of our greater community stepping up in a time of need. Thank you.

The tension that it creates, however, is that there is a line. There is a very blurry and often wandering line that Jess and I are always trying to be aware of. The line has very little to do with you and very much to do with our own emotional and mental health. Because there are times that we might need help but we just don’t want it. We don’t want to always feel like we MUST have helped to survive. We don’t always want to feel like our home is overrun with people (a stark change from how we felt before I was sick to be perfectly honest). We don’t always want help…even when we may need it. Sometimes we just want to be a family. Sometimes we want to pretend like we’re normal, like our life isn’t overrun by the cancer narrative. Sometimes we just don’t want to receive.

And the reality, I think, is that those impulses are not bad. They’re not off. They’re not ‘wrong’ (though I hesitate to use that sticky word). It’s a valuable tension to hold, one that, again, is blurry in its definition but important in its usage. It’s very very important that we, at times, create those boundaries and allow both openness to receiving and protection from it to be a part of our story.

So to Blur the Lines a Bit…

I’m asking for a bit of help here. One of the things that has been hugely helpful has been the occasional meals that people have dropped by for our family. They’ve been a non-intrusive way for people to care for us, it provides a huge relief for us amidst the stress of life, and amidst the time crunch of doctors visits that run up until 5pm often days. Here’s what our friend Sherilee, who is graciously managing all of this, briefly said:

For those of you that know and love Ryan and Jessica Woods…here is a organized way to sign up to bring food. To give them time together and not worry about what to make for supper – a small gift that means so much.

She says “supper” because she’s Canadian–and we forgive her for that–but it is a small way that you can bless our family from near or far away (they’ve suggested that you can order food to have it delivered or creative things of that nature). It’s all online so it’s amazingly easier than ever before! Thank you so much for your participation in caring for our family during this really strange and surprising time of sickness. I hope and pray that one day we look back on this time and see how it was shaping us for a future life together. But if the story is different–if the story continues on the same path that it’s gone thus far then we are especially grateful for every moment that you help to create for us to be together as a family and for me to pursue a path of health as much as is humanly possible in this life.

peace.

Here’s the link to take a meal.

Video Blog: Moving Day

(lets try this again. I just posted this video blog and it was…well it was kind of blank…my apologies)

Well my leg just ain’t working very well anymore so we’ve decided that it’s finally time to move my bedroom downstairs. So all you kids that have enjoyed that playroom…sorry! It’s not a full move (yet) because the thought of mom and dad sleeping downstairs away from the kids is pretty terrifying for India and Jones. So for now the hope is that I will only have to go up those stairs once a night to tuck my kids in and go to bed myself. Eventually the hope will be to fully move to the main floor, but for now it’ll come in transitions.

We are also giving each of the kids their own “special” rooms as they have been sharing for their entire lives.

Lots of change

And Falcor. (that’s why you’ve got to watch the video blog)

Enjoy

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