I lost this title in traffic.

One of the annoying things about chemobrain for me is I can’t hold onto thoughts any more.  I know I *had* a good title and first sentence for this entry written in my head but somehow between the hospital and my office I lost it.

I blame Dan Carlin (the Podcaster).  His two shows, “Common Sense” and “Hardcore History,” are guilty pleasures of mine and I was enjoying one on the drive to work. DAMNIT DAN CARLIN*.

* Not really, I love Dan and wish he was our President.

While I’m thinking about it, I’m not sure I’ve ever really delved into my particular flavor of chemobrain.  Perhaps most annoying is that I’ve almost totally lost the ability to digress and then get back to my original train of thought. I’ve been trying to train myself to not do this anymore as a result because the number of times I have to ask “I’m sorry, what was I talking about?” is seriously embarrassing.  My vocabulary has suffered as well — I find myself struggling to recall words I know I used to be able to find effortlessly.

I’ve said it before (I think in the last entry, come to think of it) but when all you have to trade on is your mental faculties, watching them decay is pretty dismaying.  But you know what?  The hell with it.  There are things in life you can fix, and things you can’t. I’m not going to quit treating my disease so that I can recollect and use “antediluvian” in a sentence.  I’m already tempted to just speak in animated gifs and let people wonder what I’m trying to convey anyway.

uw0n5gv

Oh, PET scan versus stupid rambling.  Had the test this morning, my second ever.  It was fairly pleasant, really. Which is odd, right? We have to do so many unpleasant and demeaning things in this war against the big C that a little Monday morning RADIATION before coffee seems like no big deal. Got the injection, had a nice chat with the tech and promptly fell asleep in the chair.

Damn you, warm blanket of warmth and sleepy warm goodness.

And damn you cancer for making the extreme so commonplace that I not only can sleep through something that by all rights should be terrifying, but instead be thankful that I got some extra rest instead of having to sit at work.

So weird.

Anywho, after 45 minutes to let the radioactive sugar (think that’s what they use) percolate, the tech had me go into the giant expensive machine and I again fell asleep during both scans (lower body and upper body were done one after the other after shifting positions).  Really the only thing that really bothered me about this morning is it occurred to me that it’s total bullshit that I’ve now been irradiated several times by professionals and I STILL don’t have any cool superpowers.  How lame is that? I can’t even have like the ability to instantly find a good ramen shop anywhere?  I could be Captain Umami or something. As terribad as the last Avengers movie was there’s probably room for me now on the team.

*sounds of Avenger’s doing Avenger-y stuff: crash clang bite meow bzzzaaappp squish squish*

*cut to Captain Umami noisily slurping some shoyu ramen and giving the camera the middle finger*

Once finished with the PET scan I wobbled to my car in a sleepy fog and went to Starbucks for the morning triple venti no foam soy latte.  I almost wish I had done the recommended blood transfusion at last Friday’s Dara session but with the later-than-usual start time I wouldn’t have been home until like 7 pm at 2 hours per bag.  The PA that met with me pre-Dara last Friday, Sarah (who rocks socks and has almost as many “ooh, shouldn’t have let the kiddo listen to that song” stories as I do) said my numbers were iffy in terms of needing a transfusion but I could wait a week. As a result, zero energy right now to the point where I’m tempted to see if they can fit me in earlier than this Friday.  Hell I got tired doing my own laundry this weekend.  And I’m not in THAT bad a shape.

Also if my 5-year-old cutest-ever princess of a daughter suddenly notes very seriously that “Wu-Tang Clan ain’t nothin’ to fuck with” to you, please just nod knowingly and let me know so I can feel the appropriate amount of guilt and then figure out how to blame my wife. Thanks.

So back to ze PET scan. As I get back into the car at the Starbucks parking lot I grabbed the card o’ discharge instructions.

There was one.

“Drink lots of water.”

For radiation?

Look I’m not a nuclear physicist but something about “drink a bunch of water” to get rid of being irradiated just doesn’t sound right. I mean I’m sure it’s probably safe.  That’s why the techs bring the injection in a metal box, have the needle to do the injection encased in metal and have the nuke picture everywhere.  But you?  You’re fine! Just drink some water.

HMMMM.

Curious to see how much this Monday morning adventure cost.  Well cost my insurance company, at least until they stop covering me.  Which I’m not even going to get into because there’s so much hype and bullshit out there right now about this TrumpCare business that it’s just not worth it to dwell on here.  For reference I believe ALL politicians are inhuman soulless scum and this is just the latest example, but I really don’t want to get political beyond that. I hope it works out and even more I hope those who created this new mess, instead of thoughtfully fixing what was already in place, know (as new Twitter friend @MightyCasey recently put it to one of her local politicos): Winter is Coming.

But whatever.  Just like being irradiated pre-latte there are things I can influence and change, things I cant, and this is not a platform for either. I am truly sorry for those of you who were severely affected by anxiety over this stuff and probably continue to be. As someone who has struggled for the past four years since diagnosis with many of those around me adding to my stress instead of trying to help relieve it, I feel your pain, and last week was scary for me as well.

It has, inadvertently, added fuel to the “drug costs are too high” argument though. I found this article this morning which I really enjoyed.  I love how big pharma tries to play this issue off on PBMs and won’t tell you the “real” cost after discounts, PBM backroom sorcery and other assorted bullshit FOR YOUR OWN GOOD, CITIZENS.

Jackasses.

As someone who not only has taken a lot of cancer drugs but who also takes Revlimid and recommends Celgene stock for my clients, it amazes me that this is allowed. Then again perhaps not, given that we’re talking about the largest lobbying group by political donation in the States. Who are also fighting (along with police unions, prison unions, etc.) marijuana legalization because being on the wrong side of history is fun for the whole family and who cares about suffering, people!  Give those whiners opioids and tell them to shut the fuck up.

Not going there (marijuana policy) today, been in a good mood all weekend even with the exhaustion and that’s a HUGE hot button issue with me. A little snark and it’s time to move on.  To …

To … um, hmm.  I guess that’s it for the core dump today.  I probably needed some crafty pithy thing to say next but I’m just too tired to be pithy today. I’m pith poor (which is much more amusing if you say it in Mike Tyson’s voice). So here’s to hoping my PET scan has something good to show us and when I hear something I’m guessing you’ll be one of the first to know.

Clinical trial pseudo-PSA thingy.

So I’ve crept out of my shell a bit this week on social media.  More like dragged myself kicking and screaming, really — Twitter is anathema to how I communicate.  I suppose on one hand 140 characters makes for a great editor but it’s too draconian for me … I spend more time trying to cull down characters than communicating.  You don’t get nicknames from editors like “Captain Verbosity” and “the King of Clause” and then do well on Twitter.

All I can say is if Twitter had been one of my editors back in the day when I was a reporter I’m pretty sure by now I’d have peed in their coffee cup.

Repeatedly.

I imagine I’ll get to the point (in life, and perhaps this very entry), if I live long enough, where I’ll just start replying “fuck you” to everything so I don’t have to deal with 140 character limits anymore.  EIGHT CHARACTERS IS ALL I NEED, NOW GET OFF MY LAWN YOU CRAZY KIDS WITH YOUR TWEETS AND TINDER AND INSTAGRAM HOOKERS.

But when in Rome, right? So this week I’ve participated in a few, for lack of a better word, groupthinks on Twitter and the information I’ve heard as a result has been somewhat startling to me.  I didn’t even drop an f-bomb, at least I hope not?  Anyways I’ve spent a long time just reading Twitter stuff from Myeloma “royalty,” but it’s a pleasant trip to actually interact with them.  It reminds me of being an intern reporter back in college and being able, thanks to the newness of the whole ‘net thing, to email the lead investigator on the Unibomber case at the time and get almost an immediate response.  I have a feeling as more patients realize their docs are on Twitter that that access may fade a bit, of course, or become more broadcast only, but for now it still has that Wild West-ish feel to it and the niche elite still interact with us plebes.

Hey if nothing else I’ve learned on Twitter that one of the Mayo Clinic docs who’s always Tweeting is a Megadeth fan.  Now that’s just cool.  It’s also the only tweet I think I’ve ever understood from him, so there’s that.

Anywho, May is dedicated to raising awareness of clinical trials.  At a chat on this last night hosted by @CureForward which you can read here, the last question was (paraphrasing) what are you going to do to raise awareness of CT issues?

Normally I wouldn’t do that (I write when I feel like doing some emotional or mental archaeology, not as a public service) but what I’ve learned this week from participating has had me thinking that this is something I should talk about here.  So let me set up my comments with one of the more startling graphics I’ve seen this week:

c-8gl_aw0aesobm

When the decision was made to switch my chemotherapy to Pomalyst, my oncologist was recruiting for a clinical trial that added an HDAC inhibitor (ACY-241, also known as Acetylon Pharmaceutical’s Citarinostat) to what I was already going to be using.  The argument for this was I was going to be on Pom & Dex (shudder) anyways, so why not add this?  The confidence and feeling that this was a standard move was great, but as a result I apparently missed out on a lot of the difficulties many patients face with CT’s.  For example, there were tests and paperwork to do, but thankfully CBCI has researchers that help with that — in fact the one assigned to me, Sarah, ended up being such a rockstar as a contact point that the process seemed easy from my perspective.  She and the others answered all of my questions and more, as usual being my best advocate (which is one of many reasons I switched to CBCI in the first place).

Given some of the troubles I had during my CT that was critical.  While something in that three-drug cocktail worked inasmuch as my numbers didn’t get *worse*, I missed a lot of weeks of drugs because one or more of the drugs was pounding on my system so hard my immune system went on vacation.  As in “four hospitalizations for pneumonia and now I’m on IViG every month” vacation.  Having someone in communication with the trial hosts and dealing with all of those issues related to my immune system was gigantic.

Not having read up on CT’s in general I didn’t realize at the time that some of the things I was taking for granted in this process are rare for most patients and I was lucky.  Such as:

  • Most patients don’t have the navigation help and advocacy that I was privy too.
  • Many patients have no idea about clinical trials; worse, neither do their doctors.  The information is scattered, outdated (that government site I linked above is not current, as I learned last night) and it seems as if patients are more lucky to find one than anything else.
  • The paperwork can be impossible to understand for normal folks but it’s pretty critical you understand it.
  • Clinical trials can be an effective first line of defense against cancer, not just where you go when everything else fails (a common misconception).
  • Not all trials pay for your medications while in the trial — I assumed that was a standard.

I realized this week as well that a lot of the questions I asked and those around me were concerned about were based on misconceptions and just a cursory, at best, knowledge of how clinical trials actually work. Unfortunately outside of “hope you have the right doctor” there’s no easy fix for this.  Scattered information, uninformed doctors, costs, travel requirements, complex paperwork full of jargon and legalese, concerns about being a placebo recipient, timing, having to find the information themselves and sell the idea to their own doctors, etc.  Well and the whole death thing, since most people only hear about a CT when someone died participating in one and assume that’s a big risk.

A lot of folks are using social media sites like Facebook groups, Twitter and websites to try to solve these issues but that’s part of the problem, sadly.  Just like with regular news, there’s such an overabundance of non-centralized information that your average patient is not even going to know where to start much less be able to navigate even just a handful of the issues mentioned just above.  And for every @Myeloma_Doc who’s advertising daily on Twitter for the trials at their site, God only knows how many people who are running their own trials don’t do so.

So yeah, it’s a shitshow.  At some point some governing body or group like @CureForward is probably going to have to centralize and disseminate information that cuts through these problems.  Given that it’s easy to assume everyone has gone digital (but I know for a fact that’s not the case), I personally think a hard-copy brochure in every oncologist office that comes from ONE source with pointers towards questions to ask your doctor, where to get trial information and dispelling myths and rumors is a good solution, but that’s just the tip of the iceberg.

So there you have it.  This is more of a blog entry for newly-minted members of our Doomed tribe, although if you are getting first-line advice here I’d recommend immediate seppuku via KFC spork.  But here’s a few things from my personal list of what I’ve done regarding CT’s that may help you on your own path:

  • Talk to your oncologist.  Are they aware of any trials?  How do they prioritize recommending them in the line of treatments?  Have they ever run one?  Do they have in-office folks to help you navigate the process?
  • Read up.  It sucks, but right now the information is everywhere and nowhere.  Go to the biggest news sources for your particular flavor of cancer (every cancer has one, even tiny lil’ Myeloma has several) and read up.  Check the forums.  Make a list of what trials you find, what other drugs (if any) they are using in the trial, if it has a local arm so you can cut travel down, if the trial host is paying for your care while you are in the trial (huge deal), etc.
  • Check out your insurance information.  I know the stuff they give you reads like some alien manuscript, but you should be able to find out at least in a general sense what they will cover for clinical trials.
  • If your oncologist is no help, well, you have a decision to make.  Keep in mind however there are a ton of folks online that would be more than happy to help you, from individuals with experience to groups putting in the work like CureForward, ASH and others.  I’ll be honest, in my opinion and experience if your oncologist (or any doctor) is not your biggest advocate, the most informed person you know about your disease and the most seemingly caring doctor you have, you have the wrong doctor.  Again your mileage may vary, but don’t die prematurely because you were afraid to ask for help from someone who isn’t helping you, or had to initiate your own treatment path.
  • Be pragmatic and don’t fall for the hype (from your doctor, big pharma, or anyone else).  Immunology, CAR-T, virology, CBD oil, cramming Turmeric up your own ass,  whatever … new technologies are coming out all of the time, but don’t let the hype fuel unrealistic hopes and then become a source of crushing disappointment and depressive episodes if your results aren’t the best case scenario.  Not everyone gets full remission or 20 years off of one drug like we’re always reading about.
  • That being said, if you want to try the bleeding edge stuff years before it hits the market, clinical trials are how you do it.
  • Help yourself while paying it forward.  Obviously when diagnosed we are a lot more concerned about ourselves, but keep in mind the drugs you are taking for your cancer wouldn’t be on the market without clinical trial participants.  Done right you’re at little risk and can get your treatments paid for, so give some serious thought to paying it forward yourself by participating.

Lastly, a few links to get you started:

  • https://www.cureforward.com/ Mentioned several times here and the organizer for the chat linked above.  Definitely good information and sounds like it solves a LOT of issues patients have.
  • http://www.myelomabeacon.com/ For Myeloma specifically this is one of the best sites I’ve found.  Columnists, news, and trial information.  I’ve had some great conversations about what I’ve read there with oncologists — be informed about what’s going on with your cancer!
  • Do a search on Twitter for #ctsm and #mmsm.  Especially right now there’s a lot of information and links to follow from #ctsm, and some great articles.  Given the fact that most articles I find on cancer are so jargoned to Hell that their unreadable I think you’ll find tailoring your tweet searches a bit can have much improved results.
  • Look at the follower lists on Twitter once you find a great source of information like @CureFoward, @MyelomaTeacher, etc. From their follower lists you will find tons of sources that will be relevant to you and your flavor o’ Doom.
  • Go here.  Push the button.  Give this to all of your friends who just don’t get the whole cancer thing.  DO IT.

My apologies if I’ve left someone off (just comment and I’ll add to that list) … at some point I really need to put together a “handy links” page.  I promise no more than half will take you somewhere totally evil and unrelated.  I’m altruistic like that.

So there’s my PSA-ish bit on clinical trials.  Dara tomorrow and I don’t have to be there until 9:15am!  Any reprieve I get from waking up at 6:00 am for 7:30 am appointments is a big deal.  PET Scan on Monday at 8:30 am so following up on making sure that’s scheduled is now off the to-do list.  Need to set a reminder to not get the mandatory Starbucks on Monday morning.  Need to listen to more High on Fire this weekend.  Here’s a bonus PSA … if you think that song sucks, double the volume.  Keep doing that until you are buying Matt Pike t-shirts on Amazon or decide that no, really, HoF sucks.

One last thing.  In answer to a message I received, yes I call people with cancer the Doomed (mostly myself).  Part of that is my philosophy on things, part is an homage to Hunter S. Thompson and mostly it’s my sense of humor.  And yes, I like the word “Doomed.” Almost as much as I don’t like people telling me to shift my attitude on my own goddamn disease.  I have a pragmatic attitude towards my cancer but I’m also told by folks on a weekly basis how amazed they are at how good my attitude about this all is.  You may disagree with using “negative” words and phrases regarding cancer and props to you if you do, sincerely — but if you are offended or think I’m doing harm to my own mental fight or others’ against this death sentence by using these things, perhaps, respectfully, my phrasing and your perception of the world are not compatible.

In other words, whitewash your own life, not mine.

Toodles!

 

Today and Tomorrow.

And now it’s May.

Time, and the seemingly multiple speeds at which it passes, is an odd thing when you’re Doomed.  I usually feel like each day is the same, day after day, like being stuck in a boat on an ocean with no real destination but the sunset.  With the exception of the occasional island stop for a holiday or other landmark the days blend, zoom by, never-ending water.

So it’s May, and next month is June, then July, etc.  Does it matter anymore?  Just names, numbers whizzing by meaninglessly.  The only difference to look forward to is each month I get to flip to the next picture in the Ariana photo calendar my wife had made for Christmas presents.  Which is not only one of my favorite things but a good focus, a reminder that the past really is the past now for me.  It brings to mind a sticker I had on my last sportbike on the mirror, a parody warning that stated “Objects in the mirror no longer matter.”

Of course thanks to chemo-brain my past is patchy at best now as well, just fragments and half-finished sentences where I know I forgot something but I have no idea what it was anymore.  For someone who traded most of their life on their brains for lack of any other worthy currency, that’s disturbing on a level I can’t really describe.

I think a big part of why I feel like the days move so fast now is simply how I’ve mentally conditioned myself to deal with stress and anxiety.  I just don’t think past “today” anymore.  As one of the Doomed I’ve come to realize that “tomorrow” contains all of the stuff I don’t want to deal with.  For example:

  • Need to get a PET scan.  While I’m curious about the results I’m also nervous.  It makes me think back to when I used to go to doctors without the now ubiquitous anxiety of all test results, something that we get to live with the rest of our lives as members of this particular tribe.  It shouldn’t be necessary to say out loud but I miss those days.  Also, regardless of how benign I just don’t enjoy the concept of being irradiated.
  • Need to figure out what’s next chemo-wise.  It may be a continuation of Dara, but given the last few weeks now who knows what surprises are in store. PACE, something else, etc.
  • Need to do something more permanent about the nausea.  I have a feeling daily Xofran is probably not the best life choice.
  • Need, as usual, to solve a problem between my wife and I and my parents.  I’m always a fan of that (not).  Second or third largest source of stress in my life and easily the longest lasting one, although cancer has done quite the job of catching up in just the short time it’s been around.
  • Need to do something more permanent about this back pain.  Part of this will be decided for me when the results of the PET scan come back, but this is getting irritating as is my need for painkilling on a daily basis.  All I know is by 5-6 pm my lower back feels like it’s declared independence from the rest of my body in a BREXIT sort of action and the Russian hacking mafia are now stepping in and making up the worst similes ever to describe things.  Jesus this bullet point went off the rails quickly.  TL:DR version — BACK PAIN BAD.

That’s not a complete to-do list but it’s the kind of line items that pop up gopher-like the minute I even stretch my perception a few days out, much less further.  And if we go further than a day or two of tomorrows we risk opening Pandora’s ever-present box.

Today?  Today I don’t have to come face to face with my darkest fears about cancer and my future.  I’ll focus on my side effects and leave the adulting ’till tomorrow.

Today I don’t have to do anything else but go home from work (where I allegedly may or may not do quite a bit of my writing), grit my teeth through the back pain and spend an hour of quality time with my daughter before her bedtime.  Tonight’s not my night to read to her but maybe today I can grit through the exhaustion too and ask her if she minds if I read tonight as well. You never know how many nights you get to do that, you know?  They feel numbered to me.

Today I don’t have to worry about PACE and all of the other awful shit hiding around the corner.  I just need to be kind and a good listener and take the medications I’m supposed to take.  Decisions can be made some other day, not tonight.  Once Ariana goes to bed all I have to worry about is what video game to relax with, what High on Fire track I want to start listening to (my latest musical infatuation) and where the fuck the pain remedies are.

Today I don’t have to pack up the laptop and snacks and a few Izzes because I need to be at the doctor at some ungodly hour the next day to start chemotherapy — seriously, 7:30 am?  With a kiddo and a 30 minute commute there from my house without accounting for traffic through the busiest sections of Denver roads?  Shudder.  That’s a Thursday problem though, not today.

Today I don’t have to think about how even were I to get to remission and stay there, I’ll spend the rest of my life waiting for the other cancer shoe to drop.  Sounds low anxiety, right?

But today?

Today I just need to get through the day the best way I can and leave the thinking, decision-making and tears for “tomorrow.”

And try not to remember that tomorrow always comes.