Dara, death and Dexamethasone.

I have three disparate things to deal with today, so let’s get to it.

At my appointment last Friday, on top of getting an IViG infusion that I didn’t enjoy (legs would NOT stop tingling and it was driving me batshit crazy) I talked to my oncology team.  The net-net is I don’t want to take Dexamethasone any more if possible (I get into that deeper in this entry) and as soon as insurance approves it we’ll be starting up with Daratumumab and not waiting for a clinical trial.  The oncologists are with me on the Dex thing as I’m apparently not doing well on it (again, will talk about that shortly) but there’s not much we can do to a certain extent.  At least they now know what’s going on.

Secondly, I found out via Facebook on Sunday that a friend, Jim, died that morning of a heart attack.  I met Jim on a diving trip before I was diagnosed, and once or twice a year since we’d get together when he’d come down to the horse park in Parker (he ran a tack shop up north).  I always felt a certain amount of pride that he usually used a pic I snapped of him diving in Cozumel as his Facebook profile picture.  I had just been emailing with him the other week too about my recent surgery (he suffered from diverticulitis as well) and getting together this summer.

Jim was a lot of things, but most of all he was one of those folks you just mesh with where it doesn’t matter how long it’s been since you’ve gotten together — it would always feel like it hadn’t been that long, something we frequently remarked upon.  I appreciated that for it’s rarity and the fun chats we had, and was jealous that we didn’t get to dive together more (or take that deep-sea fishing trip we talked about).  And I loved that, like me (and I think inspired by me putting a bouncy house in my living room one day), he had put a hammock swing in his living room for his beloved granddaughter.

He loved his grandkids and was about to have a third.  From the last email he sent me in late January,

What’s really funny is how my dreams have changed.  Instead of the usual which causes me to wake up feeling like a 17 year old, or business stuff, last night was about negotiating with my daughter about rotating the kids on a weekly basis.  Since she’s expecting another girl in May, and considering the size of her house with only 3 bedrooms, instead of doubling up a couple, this made sense…or simply let Cooper come live with us.

I dunno.  I’m never sure about what to say about someone who’s passed.  I wish we had more time, and Ariana had had a chance to meet Clara and his other grandchildren.  I wish I hadn’t been sick those times I wanted to take Ari to the horse park.  I wish, I wish, I wish.

When I’ve thought of Jim these past few days I have recurring thoughts of how Hunter S. Thompson wrote about his friend Oscar Zeta Acosta.  This is sort of how I saw Jim, in a way, this larger than life person that you better take seriously because he probably wasn’t kidding when he said he’d drill a hole through the wall of his shop to the dispensary next door if I ever needed it (true story).  So perhaps I’ll just put this here, a paragraph from Hunter’s epitaph for his friend, and leave it at that.  I’ll miss you something fierce, Jim, and I hope you were right about what you told me you were hoping for on the other side — although I don’t share the belief I never forgot you telling me about it or uncrossed my fingers that you were right.

Stand back. He is gone now, but even his memory stirs up winds that will blow heavy cars off the road. He was a monster, a true child of the century – faster than Bo Jackson and crazier than Neal Cassady…When the Brown Buffalo disappeared, we all lost one of those high notes that we will never hear again. Oscar was one of God’s own prototypes-a high-powered mutant of some kind who was never even considered for mass production. He was too weird to live and too rare to die.

Moving on, wistfully, although I try to avoid overwhelming myself with too much myeloma stuff (I mean I have the cancer, I don’t need to spend all of my free time reading more about it), when I do read about it one theme continually comes up — how awful Dexamethasone is. Given my recent chemo holiday thanks to (1) my colon resection surgery in mid-January and (2) the clinical trial results crapping out in terms of effective treatment, I’ve had some time to really think about this drug and chemo in general.

I mean hell, I haven’t been Dex-free, with the exception of the couple of months during and around my stem cell transplant, for what, four years now?

So I’ll get to why I’ve been thinking about Dex in a bit, but for background Dex is a glucocorticosteroid, which is a 27-point word in Scrabble.  I haven’t the slightest idea what in God’s name a glucocorticosteriod is, but I’ve learned by now if I look that up I won’t understand what it says anyways.  So just practice saying “glucocorticosteroid” and then at least you’ll sound like you know what you’re talking about.  Make a serious face when you say it too.  Maybe borrow some glasses and a clipboard to add to the effect.

What I do know is that it’s used in almost every multiple myeloma cocktail (multiple drug treatment) there is.  Not only can it apparently kill myeloma cells, but it also increases the efficacy of at least some drugs it’s commonly mixed with.

It also sucks.  Like seriously sucks.  In fact I’m incapable of explaining, I think, how much it sucks.

Before I even get into that, however, another quick digression — Rich, why are you writing about this today, or really, why are you even writing this blog?  I’ll admit, it has been dark enough lately that I’ve wondered that myself.  So here’s the thing … (1) it’s cathartic to me as a lifelong writer and blogger, (2) it’s a good way to keep folks updated on what’s going on with this disease and I, and lastly (3) I’m hoping it might provide some real information to folks with Google and myeloma.  Because man when I got diagnosed I think the first thing I saw Googling it was “yeah my aunt had that, got diagnosed and was dead a month later.”

So I’m blunt but I’m being honest, both about this cancer and what I’m going through with it.  Cancer patients think about things like suicide, just giving up on the chemotherapies, feeling helpless, etc.  That’s real.  Yes it’s also real that some folks get cancer and become marathon runners and climb 14’ers, but I really think that’s more the exception rather than the rule.  It’s stuff like that that has me avoid places like the Myeloma Beacon like the plague — I just can’t deal with people whitewashing their own illness for various reasons.

Folks, cancer sucks syphilitic monkey nuts.  Don’t fool yourself.  It’s not fun.  It doesn’t add to life.  It takes everything you were and throws it away no matter how hard your try to hold on to it while pulling back the curtain, for most of us anyways, on a world so horrific that we generally don’t talk about it for a reason.

Further, feeling like that and then seeing blog post after news article after tweet after Facebook viral share about those people who “rise above” or whatever they call it and do all of that stuff most of us couldn’t do before we had cancer just seems to make people with cancer feel like lazy, bad attitude malcontents because we’re not immediately raising cancer awareness by biking a billion miles or talking about how having a cancer diagnosis has somehow magically made us the greatest and most active person on Earth.

To me, that fucking sucks.  I don’t begrudge those people their lives but when it’s the ONLY cancer stories you ever hear or see covered it gets old, and honestly it hurts a bit.  “Oh man, I have cancer and … Jesus, am I supposed to be feeling and doing that?  Wow I suck.”  It doesn’t help that there are a lot of folks out there who think you are supposed to be that too, and will treat you differently if you aren’t.  “You just need to have a good attitude …” No, I need your capricious deity you keep talking about me needing to not have given me something terminal that’s rarer than winning the lottery.  Thanks though!

So this blog is not so much a reaction to those people and their unrealistic lifestyles, but for people like me with the same fears, depression and anxieties that I and others I’ve talked to with this goddamn death sentence have.  I know at least for myself that’s the only way I’ve shored up my own emotional and mental defenses at times — just knowing someone else out there thinks this sucks too.  So yeah,  I’ll say it.  I’ll admit to it.  I’ll go into why it sucks in gory detail.  I might even use big words, and f-bombs.  And if you’ve felt it, then you know you’re not alone.  And if you haven’t, then hey, I’m happy to be the poster boy for “man, at least I’m not as bad off as this clown.”  Go run up a 14’er and piss off, these words aren’t for you.

On that note if you’re here because you were just recently diagnosed with multiple myeloma and you Googled some of these drugs, well, you won’t leave this blog entry feeling better, I promise you that.  Then again you have incurable cancer, you poor fucking bastard, so you might as well learn what the doctor ISN’T telling you. And PS, if you need to talk to me directly that option is always available to folks — just use the contact bit here on the blog with your email address and what’s up.

Back to it.  So part of the problem is, as I’ve written before, doctors (for obvious reasons) don’t so much lie as sort of gloss over things.  Which isn’t a bad thing, don’t get me wrong — I don’t need to have my doctor say “well we looked at the weekly results and on a scale of 1 to Fucksville, buy a one-way ticket.”  I just get tired of the whitewashing of things.  “You may experience a bit of fatigue …”  Really?  I’d call needing a triple venti no foam latte 1-2 times a day to fight off narcolepsy as a tad more than “fatigue,” but hey that’s me.  Mood swings?  Yeah, for four years that changed who I was and threw my marriage down the toilet.  Weight gain?  So bad it helped fuel a depression I’ve had to get professional help and therapeutic prescription drugs to deal with.  Disastrous effects on my sleep.  Etc., etc.  In fact there isn’t a lot I HAVEN’T experienced off the list of side effects, when I read them.

Of them all (that I’ve taken, which has become quite the laundry list at this point) the Dex is by far the worst.  Not only does the drug have horrific side effects but I managed to experience almost all of them to the point that the drug really has fundamentally rewired me.  Combined with the other things I was going through this drug put my relationship with my daughter in jeopardy, has my wife and I struggling to maintain even a remotely amicable relationship, and a few weeks ago damn near almost killed me.

I won’t go into the details of that night, but I will say it was the second time in my life (both after my cancer diagnosis) that I’ve had to research suicide prevention for myself.  And said an atheistic prayer that I don’t have a shotgun in the house and got rid of the ammo for the hunting rifles.  On the bright side I learned that children of suicides are more likely to go out that way themselves, and women are three times more likely to attempt suicide (although men are more successful at actually doing it, according to the social work at my oncologist’s office).

Things you learn when the only reason you haven’t done yourself in, and hopefully never will, is your daughter.  Follow a few links off of Googling “daughter of suicide” to put a brake on that plan, trust me.

Being on a chemo holiday for almost two months now has shown me (and those around me) who I really am, and presumably used to be at least in general.  Playful.  Engaging.  Helpful.  In a good mood.  A good listener, and friend.  Funny (if you like my sense of humor).  A hard worker.  A better father, and a better husband.  Etc.  Not to say I was some saint before all of this happened, but I sure as hell wasn’t the 9th degree black belt  asshole Dex made me into.

So I let the oncologists know all of this that has been going on with me on Friday, which scared them a bit I think.  One, Megan, related to me a horror story about a patient who came to her late one afternoon years ago because as a gun collector, he didn’t feel safe being at home anymore with all of the guns.  My doctor was rubbing my leg in sympathetic sadness as I was relating this because I was not doing well talking about it — it’s scary though, man.  We’re talking now about how I’ll be remembered, how I treat people, the never-ending scramble to hold on to what little of my former life and my relationship with my daughter I can find the fragments of.  Who Dex makes me is not the epitaph I want.

And what kind of a shitty choice is it to have to choose between who you are and trying to beat this fucking disease?

So yeah, that’s Dex.  I wish I had some great answer here for people as to how to deal with this but I just don’t.  It’s in almost every therapy we do, there aren’t enough studies done for doctors to comfortably cut the dosage or replace it with something else (although some do) usually, so we just have to deal with it.

The only bright side is apparently they used to dose even more of this horrible shit than they do now.  That’s terrifying to me.

Seriously.

I have a draft of an entry on the devil pharmaceutical (Dexamethasone, for those not familiar with myeloma treatments), but while I polish and focus it a bit more I wanted to share a picture.

This morning a good friend of mine shared this article and it reminded me of this meme, which is funny but also kind of true, isn’t it?

a7bge0m_700b_v1

Not to throw shade at science but sometimes you wonder if in some areas we’ve gone too far — I read or experience all of the time how effective natural remedies are, and for fairly serious things too.  Google “ayahuasca,” “ibogaine” or “psilocybin mushroom ptsd” some day when you have some time, really interesting.

 

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.

Ouch.

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.