I’m totally over this whole cancer thing. I mean, seriously–it’s so 2011 ya know? I miss seeing my downtown crew, the group of people that never make it into a schedule because you happen to run into them whenever you’re around town. The problem is that I’m never around town anymore. Things in my body have changed so drastically over the last few days, weeks, and months that my presence in my downtown neighborhoods has dwindled to nothing…and it’s killing me (not literally folks…at least I don’t think so!). I absolutely hate it for more than just a few reasons. But…it’s just a part of the story that I can’t seem to get away from these days.
Speaking of an inescapable story, let me quickly give you a summary as to where my body is right now. Headaches have become normal. We don’t know what is causing them, but I tend to wake up with a throbbing type of headache that comes and goes throughout the day. It’s manageable, it’s not debilitating, but it’s there.* Then there are those times where the headaches get out of control. They (the out of control ones) seem to come about every 1.5 to 2 weeks and they always draw me back to the ER (they always seem to happen on the weekends too!). The problem is that when the headaches get too bad they induce vomiting which keeps me from being able to effectively manage the pain on my own. Anyway, so weekend trips to the hospital have sadly become routine around here as have the debilitating headaches. Not the routine we’ve been hoping for!
Simultaneously my ability to walk is getting worse and worse as my right leg has become less functional. This has a greater impact than I can write about here; it deserves a whole blog unto itself. Living in a three story house and being a guy who hates to sit still in his own home this has caused not only great identity crisis but also is creating more physical pain as I refuse to slow down my life in accordance to what my body is telling me I’m able to do. My body is screaming at me to slow down, but my heart/mind/spirit/arrogance is refusing. So what ends up happening is that I crash at different moments into a puddle of exhaustion and my wife is left picking up the pieces.** Showering is exhausting, tucking my kids into bed wears me out, standing while doing the dishes leaves me sweating, essentially anything that defines home life wears me out and leaves me huffing and puffing. Sadly, my favorite pastime: reading, is a freedom that I don’t have as much anymore due to my medically induced narcolepsy! Anytime I sit down to read I end up falling asleep! it drives me absolutely crazy and is one more thing that I can no longer do!
Anyway, this blog was not intended to be a whining blog…though I think whining occasionally is perfectly OK. My intention, however, was to say some of that simply because I want you all to know where I am at right now. MRI results will be in this week and we’ll find out if the headaches are due to tumor growth or something else. The results will give us one more small piece to the puzzle, but as I think I’ve shared before, MRI results only mean so much. We’ve come to rely less on these results because they can be so fleeting in their significance. Due to the volatile state of my type of tumor, what a scan says today could be completely opposite of what it says in four weeks! Regardless, I’ve said enough concerning where things are at. Due to some of the above factors (and a few others I haven’t written about here) my life is once again filled with sick moments, regular doctors visits, and now new visits with specialists of all sorts and sizes. Or, in other words, my life has not created enough time for me to be with you or to have quality time with my wife as I would prefer.
My fear and greatest burden right now is missing out. I’m missing out on all the fun. I’m missing out ’cause I’m just too tired to participate fully. I’m missing out ’cause I’m codependent with transportation. I’m missing out ’cause I don’t have time due to all my doctor’s appointments. I’m missing out ’cause I’m sick as a dog. I’m missing out and I don’t like it. But it is, weather I like it or not, a part of my story right now. It just is. It’s that part in the middle of the movie that’s not very good, the part that you endure ’cause you’re hoping (assuming?) that it is building up to some kind of more interesting and fun-to-watch part of the movie that should be following it. It’s not a lull but a building crescendo right? Please tell me I’m crescendo-ing right now ’cause otherwise this is just plain ol’ boring and I’m kind of done with this scene.
If Act One of my movie was all about discovery and initial recovery; Act Two was about trying to figure out what life looks like as the cancer boy; Act Three was the lull of digression (what this blog has been about); at some point Act Four must begin and it should be an act marked by life giving activity, by healing, by community, and by refreshment. Right? What will act four be?
The hope, then, is that this movie is shelved in the feelgood section and not in the drama or tragedy section of the stockroom. Right?
How about this: Lets just go out there and make a good movie okay?
* I know there’s lots of good ideas for what to do to get rid of these or to manage these–so please know that we are and have been exploring options. I appreciate your concern and your creativity in sharing different ways of treating this stuff, but I really do have an amazing support structure around me that is always pursuing new ideas and options. So don’t worry!
** Another whole blog needs to be written about my wife’s role in all of this! Shesh, I’m not sure who has it worse to be honest. She does so much and receives so little praise or recognition for what she’s constantly having to give up. She is amazing-a thousand times over amazing- and she makes so much of my life possible through her hard work and constant sacrifice.