Been a long couple of weeks. Too long.
So on the 18th a surgeon cut out a good 5-6″ of my colon to get rid of a section that was constantly getting infected with diverticulitis. That was painful but once my systems started working again they let me go after about 5 days. That’s cool too — normally I’m kind of a fan of hospitalization, but between the constant sweating (no clue why but I was soaking myself constantly in sweat) and the inability to find a painkiller that was actually getting the job done I just wanted to get home. Plus for whatever reason I keep sliding down in hospital beds. No idea why.
Unfortunately, a few days after I got home my daughter got croup. Not only was I broken up for her (that’s just a horrific thing to listen to your kiddo go through, that barking croup cough, although she weathered it well), but as usual I was terrified I was going to get something upper respiratory as a result. Sure enough, even with the pre-surgery IViG, I managed to get a cough too.
When you’ve had stomach surgery the last thing you want is to put any pressure or strain on the staples inside your stomach — i.e., no lifting, and NO COUGHING. You can kind of take the pressure away squeezing a pillow but it still hurts like the Dickens. Every cough, every single one, all you think about (at least me) is one of those things popping and the rest of your life with a colostomy bag (or just dying). Not helping me mentally was right before this I had about 2/3rds of my staples removed, and in one spot I started leaking pretty seriously. So my wife dragged me back down to the surgeon’s office, who drained things, told me I was fine, couldn’t find the 100 temperature we had measured at home, and gave my wife instructions on cleaning things every day.
That all sounds OK, right? Here’s the problem.
I have now not slept well, or without significant pharmaceuticals, in I don’t know how long. I’m mixing Xanax and painkillers and cough meds just to get to sleep and do so without coughing up titanium staples. There isn’t a single waking moment I’m not in pain, and it’s seriously getting to me. I just … I don’t want to do this anymore. I’m always sick, you know? Christ I’ve already given up just about everything I loved about life in the last four years … and now there’s more pain and misery? For what, man?
I’m not even mixing in the local stuff … bad ideas when you have a cough and don’t want more of one. It can’t deal with pain on this level anyhow.
I look around and I see everyone else living their lives with their own problems — don’t misunderstand me, I know everyone has problems. But I’d kill for a day of just non-medical problems though — keep in mind I’m usually the first one when someone downplays their own lives’ troubles compared to mine to ask them not to do that because it’s not fair to either of us. But man, I can’t figure out a single day in the last four years now where I haven’t been sick, or in pain, narcoleptic, in a hospital, etc. Gimme a day of someone else’ problems, you know?
They say myeloma is a “treatable” cancer. But at what cost? I can’t fucking do anything anymore. I feel like hell 100% of my waking time to the point where I read about people losing this battle and I’m kind of jealous, frankly. This just isn’t living to me. I know why I am doing it, for a specific lil’ five year old, but hell I can barely keep that image alive in the depths of some of the pain or just emotional/mental darkness of this all. This. Is. Not. Living.
I know that attitude sucks, I do. I know it’s negative thinking, blah blah blah. But it gets so hard to see the path anymore.
When you spend this much time staring at ceiling tiles in hospitals and praying just for sleep you do a LOT of introspection. Well maybe just I do, but it makes sense that others would in between being glued to their cellphones. What else would you? I’ve been trying to figure out lately how in 46 years I grew into a person that has to ask for hugs. I’ve come up with a lot of answers, none of which I’m going to relay here, but seriously. I’m not that bad a person. Or maybe I am? Am I so unapproachable? It’s hard to describe how emasculating it is sometimes to have to ask someone for human contact, I can’t explain it adequately. Do yourself a favor and don’t ever experience that one yourself.
Oh well. I have an appointment in mid-late February to restart chemotherapy. Yee-haw, back to drone life.
Oh one thing I did want to mention is if you are in Denver or close by and need the best around for stomach surgery? Dr. William Plaus. Love this guy. Also while sitting here tonight I started going through my mail and found a card from some of the nurses at Rose that took care of me wwith eight tiny handwritten notes. That cheered me up a bit, nice touch.