Living with Terminal Cancer
Lots of people are sick, lots of people have cancer, lots of people have had major surgeries…but there are certain things sick people don’t seem to talk about. This blog post might be awkward, it might not be appropriate for kids (do kids read my blog?), though it should be safe for work. The reality is that some of the crap that comes with sickness is embarrassing and awkward and (potentially) inappropriate for virtual online conversation…so lets jump in!
Constipation– Do you realize that virtually every medicine has a side effect of constipation. Vicodin, blood thinners, chemo, anti-nausea meds, they all have side effects that include constipation. Did you know that if you’re constipated for too long it’ll actually make you have incredibly terrible flu-like symptoms? Apparently having rotting crap in your body isn’t good for your body at all. Anyway, this is a constant battle, one that can make a huge difference on a day to day basis on how I feel and how I’m functioning. But who wants to talk about poop? I do.
Time consumption– I’m in a sweet spot right now where I don’t have doctor’s appointments every five minutes. But in general since I’ve been out of the hospital I’ve had 3-10 doctor’s appointments a week. Between meeting with the brain surgeon, my oncologist, the radiologist, my general practitioner, getting my blood thickness checked, acupuncture, nauropathic stuff, the times I had daily radiation, reki, physical therapy, MRI scans, CT scans, X-Ray’s, occupational therapy, massage therapy…turns out my disability isn’t from cancer but from the sheer time commitment associated with fighting it!
Loss of dignity–Oh how this was quickly beat out of me. First off, they don’t tell you prior to surgery that aside from your ears they will literally stick a tube in every single hole in your body. No exceptions. Secondly, after you’ve had a catheter ripped out (and put back in and then ripped out and then put back in and ripped out again) by the same nurse that you played cards with that night you come to a place where you don’t care much about your body and its former standards of privacy. Once you’ve had people help you shower and go to the bathroom, once you’ve sported diapers in public, or been given a tool to help you wipe…you’ve essentially crossed that threshold that says “I just don’t care anymore”. I imagine this is much of the struggle of the elderly as they have to give up so much of their dignity that they’ve probably spent much of their life holding tightly onto.
Body changes– If only you could see me naked. I’ve never been the best looking dude, always on the awkwardly scrawny side, but I’m a little creepy looking now. No seriously. A giant scar on my back, massive stretch marks across my stomach and sides, random tattooed dots (used for my radiation treatments) on my chest and sides, rashes, acne, nasty sweats (as my body expels toxins), less hair in the right spots and more hair in the wrong spots…gotta love my new look!
Sex– There was scene in the movie 50/50 (please watch it) that brought me to tears (ok, there were many parts that brought me to tears). Awkwardly, it was the sex scene.* In the movie the friend of the 28 year old guy that gets brain cancer tries to hook him up with a girl so he can have sex (thinking it’ll make him feel better) but in the end the guy is in too much pain to even enjoy something as pleasurable as that and has to stop half way through. I haven’t heard many sick people talk about sex. Not only is there an emotional piece that is lacking (when you’re sad about dying sex isn’t often on the forefront of your mind), and not only is there they physical piece that your back hurts to bad to even engage fully, but there’s also the physiological piece. Many drug side effects can affect a dude’s testosterone levels in incredible ways. So emotionally you’re often not up to it, physically you hurt to bad to engage in it, and sexually you’ve lost much of the drive to pursue it. People don’t talk about sex and cancer much…but it’s a big deal and it’s a big loss, and it should be talked about more. Trust me.
Desire for normalcy– I’ve never want to be normal much. Normal seems boring. But after being sick and being ‘abnormal’ for reasons out of my control there is a strange drive for normalcy. Even though (as I’ve written about) normalcy is both a myth and an illusion it has become a major attraction. I crave it. I want it. Even if I don’t know what exactly it is I desire it. Maybe sick folk talk about this but if they do I think people feel a compulsion to correct them: “Normal is boring! Don’t be normal! What is normal?!” Whether it makes logical sense or not there is a strong compulsion for normalcy: to be able to have ‘normal’ sex, to be in control of what my body looks like, to choose who gets to see me naked, to have a schedule filled with things I want them to be filled with, and to have a regular pooping schedule! Those are just a few of the ‘normal’ things I crave.
This whole journey has been such a trip. So many unexpected feelings (I didn’t even talk about that element!), so many surprising realities, so many experiences that I never thought I’d be invited into. We’ve got no idea what lies ahead of us though it is so comforting to look behind us and see how an amazing supporting cast has carried us through this far. On our own we’d be a crumpled up mess, but with the supporting cast of all of you and with the story God’s inviting us to experience in Him we may still at times be a crumpled up mess but at least it’s a crumpled up mess that God is fashioning into a piece of art.
* Let me just say that I hate and avoid sex scenes in movies. I don’t care if it’s artistic, if it plays an important part in the movie, or whatever. I just don’t like watching people have sex. Sorry, as one of the ultimate expressions of love it’s just not something that I want to watch other people engage in even if it’s actors in a movie. It’s too special and too intimate to tarnish by watching other people engage in it…with that said, there’s apparently an exception to ever rule.