Back to the grind.

Sitting here at work.  Actually I should say “slouched” here at work … it’s hard to sit normally without pain still a few weeks post-op, a feeling enhanced by this being the first time I’m wearing actual pants and a belt for the first time in a few weeks.

I seriously considered rocking the Cabela’s fleece pants I’ve turned into a uniform since the surgery, but that just feels a bit too casual. Plus both pairs I own are dirty as I noticed this morning.  Noticed forlornly, I should say, while looking at one of them just taunting me from the top of the laundry basket.  As if I could hear them tell me how they would just snuggle there all day with my ‘Archer for President 2016’ t-shirt while I went to a desk job.

Damned pants.

Only operating on about two hours of sleep today.  I haven’t slept well since the surgery in fact — I’ve been trying to track down the “why” of that every night but I think it’s a combination of things.  No chemotherapy, pain and discomfort, this cough that won’t go away, etc.  I used to just go upstairs and hit the mattress to fall asleep, but in the last week I find myself up almost every night at some ungodly hour wondering “now what?”  Knowing I was going to be driving today took all of the opioids I have off the table, so I’m just trying to suck it up.  Hell, I made it this far already.

The next few months should be odd.  Dr Matous wants to get me into a clinical trial that I linked earlier and am too lazy/busy to look up again, but it has two pre-reqs that are dictating my current care:  can’t have taken Dara yet, and I have to have relapsed since my last treatment.  There’s a waiting list for this trial so they are thinking March/April to start, which times decently with my surgery recovery.  That’s a long time to be off chemotherapy, however — the only time I’ve done a stint this long is when I was doing my transplant.  Can’t even imagine what my numbers will get to, although it’s freaking me out a bit.

I’ve done a lot of introspection in the last several weeks.  That doesn’t sound like a lot of time, but it’s (a) obviously coming on the shoulders of much more introspection before and (b) you find something better to do when you can’t sit up and you’re afraid to cough for two weeks.  I’m not going to step-by-step it but my conclusion, frustratingly, is that there isn’t a ton I can do to change the things bothering me.  And there’s a lot bothering me.  In fact I pretty much can’t stand who I’ve become in some ways, now that of course it’s too late to fix some of those problems (career choices, relationships, location, paths taken, etc.).

I want this heroic story for someone to tell my daughter someday about her father, you know?  Or at least one that makes her proud of who I was.  That’s just not “this” to me right now.  It’s an epitaph hunt.  And I hate what it says right now.

Problem is, as someone once told me, is that as we get older we put tent pegs in the ground that get harder and harder and too numerous to pull up.

I embody that, I think, like some poster child for apathetic decision-making.

Some changes are simply too risky when you have cancer.  In ways that does run contrary to what you’d logically think, right?  “Man if I had cancer I’d sign up for sky diving and shark disciplinarian and GOP booth guy at Berkeley and blah blah blah because what do I have to lose?”  I’ve noticed that most of the fears I spent my life surrounded by are gone, certainly.  I don’t see me getting a pet spider anytime soon, granted, but the rest?  What do I care?  Go get chemotherapy next to a pair of women chatting about secondary cancers sometime.  Spend a lunch hour getting filled with poison or trying not to cry in a car.  Look your child in the eye and feel every ounce of the ultimate failure you feel like as your body fails and you can’t play with her “right now” but the “right now’s” are stacking up.  Get a few bad blood tests under your belt.  Have a few therapies fail. Yada yada yada.

Now tell me, what’s left to fear anymore?  The dark?  Laugh.

That being said, however, you get a few new fears with a diagnosis.  Losing my health insurance would certainly be one.  Really any major lifestyle change — let’s be honest, I’ve got it good; better than most, in fact.  I can’t imagine the extra burden of having to scramble to make ends meet, or having terrible (or no) insurance.  I really should add up what this has all cost so far but I know for a fact it’s well in the seven figure range by now.

And that’s sort of the point — so you get this diagnosis and start looking back at things, wishing you could tweak this or re-do that, but now the big shifts are too risky.  This level of introspection has certainly fomented a lot of smaller changes, though.  So while I don’t feel comfortable starting a new career or moving, for example, I can put the goddamn phone down and interact with my daughter more.

Net-net, it’s turned me into trying to be the person I wanted to be within the confines of a box I don’t want to be in but will not be able to realistically get out of.  That’s about as succinctly, albeit inelegantly, as I can put it.  I can’t go be a tech rockstar in San Francisco now, or take a coding job like I should have 20 years ago since tech has always been my passion.  It’s a bit late to go start up a dive shop in the USVI.  Hell with all of our support and docs here it’s a bit late to go live on a beach somewhere.  But I need to find more of the little things, the footnotes, that hopefully people will remember about me.  Because I’m finally starting to actually learn, not just pay lip service to, the stuff that apparently actually mattered.

Quick update.

We’re about a week and a half out of the colon resection surgery, and I just wanted to post a quick update.

So the biggest news, really, is my daughter has croup.  Not to take any pleasure in that because it breaks my heart whenever she coughs, but I’ve managed to avoid getting sick!  Guessing that’s a combination of the IViG and not being on chemotherapy, but I’ve also gotten a lot better at being OCD-like in washing my hands in the last few years.  It’s difficult, however, to have to keep turning down her invitations to do stuff due to the pain in my stomach.  She’s being a good sport though — man if I had a cough like that I’d be, well actually I think I’d be in the hospital because I would have ripped all of my staples internally and externally.  Hell I’m terrified when I sneeze.

Met with the surgeon on Friday (27th) who is happy with my progress and took out about 2/3rds of the staples (then added some tape and glue).  Have another appointment this coming Friday presumably to get the rest removed.

This hurts.  Much like the understatement that “multiple myeloma causes fatigue) always feels like, saying this hurts feels like an unworthy explanation for something fairly monumental that even adding a f-bomb before it doesn’t quite cover.  I’ve been in some level of constant pain every waking minute since the surgery.  My home remedies and the prescription Dilaudid take the edge off but that’s about it.  Never really experienced something like this, and it’s put me in this zen-like state of trying to shorten my perceptual time-horizon to the next few minutes and just trying to be comfortable and philosophical about it all.

That’s about it … I have a few things percolating in my head that I’d like to get on paper at some point but quite frankly just sitting here hurts, heh — I have to do some serious improvisational yoga to just stay remotely comfortable when I’m not laying down and I try to avoid that too too much since just laying there isn’t helping me heal (supposed to be walking, etc.).  Need to contact the oncologists here too and get that ball rolling again, which I’m trying not to think about.