Spoke too soon.

Developed a temperature yesterday and spent the entire day asleep except to wake up and hydrate.  Leaking/seeping from part of my stomach through every t-shirt and blanket I put on to avoid the chills, which is impossible because I’m sweating so much when I’m asleep I’m scared of drowning.  Every time I cough it hurts all the way through my stomach, which is not a fun feeling.  Meeting with the surgeon tomorrow morning, early, while dosing myself with oxy’s and cough meds.

You know I’ve been dealing with some hardcore medical stuff now daily for four years and I’ll be honest, I’m fucking sick of it.

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.

Releasing the chocolate hostages.

It’s been a long two weeks with some physical blockades preventing me from updating here, but I wanted to get a few things down before they get lost in the morass of my leaky memory.

So as a recap, after several recent recurring attacks of my long-running battle with diverticulitis the GI doctor I see here wanted me go the surgical route.  After the usual meetings and phone calls between the oncologist and surgeon the date was chosen, January 18th, and I began preparing.  Strictly for the surgery this isn’t anything too onerous, just the usual kind of prep you’d do for a colon-related exam/surgery to clean things out, not eating/drinking after a certain cut-off and in my special case as a cancer patient some antibiotics the night before.

Not entirely sure how a single dose of an antibiotic is supposed to stave off the hungry hordes of bacteria, but not sick yet (knock on wood) so as usual people know more than I do.

The wife drove me down to Rose, they prepped me for surgery, and the next thing I remember I was in a hospital room.  The surgeon was unable to do my surgery laparoscopically as he decided to remove not just the original one planned but two sections of my colon and fuse it all together, nor am I 0% body fat guy either which would have helped.  Instead I got cut wide open and then sewn up with a suture that goes from my belly button to my side.  Seriously, I have staples across my stomach.  Pretty creepy. I’d be tempted to make a Nightmare Before Christmas face of it but with my luck it’d cause an infection and kill me, which is one of the more stupid ways to die.

Although kinda funny.

I had a really cool conversation pre-surgery with the anesthesiologist.  I had no idea how moment-to-moment their job was, quite frankly.  Pretty neat.  He said I wouldn’t remember him though so here’s to you, um … shit.  Mr. anesthesiologist guy.

Anyhow, at this point recovery consisted of pain management, which we all did a terrible job of since I’ve been in pain every waking moment for a week straight, and getting my bowels working again.

I started on IV Dilaudid but unlike when Sky Ridge was trying to kill me late last year it just wasn’t enough.  Unfortunately, even though Rose and Sky Ridge are both HealthOne facilities, I couldn’t find someone willing or able to look into that stay and find out what the dosage was.  That’s nonsensical to me, but whatever.  Net-net was I could not get them to increase it to a level that worked or was close to the impact it was having at Sky ridge (instant 0% pain, hallucinations, good sleep), so then we switched to Fentanyl.  I sat there one of the days with the “fun-button” set to six minutes and it took 36 minutes to get to a dose where I was remotely even feeling it.

In the meantime they were supplementing the different pain meds with some other drug called Toradol, I think?  Not sure but it didn’t work for beans either.

So the next thing you have to do is pass gas and get your bowels moving again.  The problem with that, and a lot of this, is that it’s really impossible from a pain perspective to bear down in any meaningful way.  Hell it’s impossible to do anything in a meaningful way except not move — it’s incredible how much we do involves those core stomach muscles, some of which I believe were cut during my surgery (intentionally!).  Either way you’re constantly worried about tearing something open, which leads to fun things like death, colostomy bags, death AND colostomy bags, etc.  Eventually things started kind of working, although it all hurts so bad I’m still not sure where I’m at with it.  I’m avoiding fiber and spicy stuff like the 5th, 6th and 7th plagues of Egypt though.

I did notice that during this process I had opened a page in my iPhone browser with euphemisms for pooping, hence the title of this blog entry.  It was a tie between that and “downloading some brownware” if anyone was curious.

My folks visited pretty much every day.  I’ll admit that makes me a bit nervous because historically things like that have been used against me with them, but it was nice for what it’s worth.  My buddy Derek came to hang out, which was awesome.  My daughter and wife only came once and nobody else, which kind of saddened me.  Don’t really feel like getting into that right now.

I was released Monday (23rd). The only real rest I got in the hospital was the last night I was there when I got the nurse assigned to me to get me a Xanax from the resident, which was good although I was zonked out when the surgeon visited and didn’t get to ask some questions I had.  No worries, however, as I meet with him this Friday.  It’s just not possible to rest in hospitals, oddly enough. Too many people constantly coming in to check on you, cables tangled, no privacy, etc.  Now I’m home resting, which is nice even with my daughter sick with yet another respiratory thing (c’mon IViG and hand washing!).

A few omnibus thoughts to this whole ordeal in no particular order of logic or pithy-ness:

  • If the longest IV tube you have is 3′ you are bad, and you should feel bad.  This is not a knock at the nurses at all, who were universally wonderful — not just saying that, they rocked.  But it’s retarded to me to not have in stock longer IV tubes or extensions available when you may be attaching patients to them for multiple days.  I had to untangle myself every single time I got up, which was frequently, and I managed to pull my IV all the way out once.  It’s cool if I’m comatose, but if you want me walking 4x a day and I have to do this weird log roll thing to get out of bed without falling or ripping everything open?  Not so much.
  • Along those lines, the tape-on Pulse Ox finger thingies are crap and get ruined every time you wash your hands.  Just use the grey rubber ones that you can jam right back on.  Not only are those less wasteful but if I need to type something I can move fingers.
  • Why do the nurse call buttons in hospital beds never work, so I’m forced to have some gigantic remote on a cable constantly tangling with everything to manage as well?
  • If you are going to charge me (well, my insurance company) a billion dollars a day, could you please not stock the courtesy fridge with the worst shit on the planet?  Seriously, look at the ingredient list of the popsickles. I already have cancer, I’m not looking to buy tickets to the sequel.
  • Unless Led Zeppelin just finished partying in my room (and even then it’s iffy), if you wake me up to empty an empty trashcan during the first time I’ve been able to sleep in a day while cheerfully yelling “HOUSEKEEPING!!!!!” I will curse you out until you leave my room in tears.  I’m sorry if this causes you PTSD.  Actually I’m not, fuck you.  Seriously.
  • If you are dealing with an oncology patient, the last thing we ever want to hear unless we’re intentionally trying to game the conversation this direction is “let me check with the resident.”  Look I totally get what residents are and what they do.  That being said, I have a really rare cancer that even doctors with a lot of skill and experience can (and have several times in my case) blow diagnosis because of.  Check with the resident if you need to know how to make my bed.  Check with my oncologist or surgeon for anything serious, OK?  You don’t have the experience to make decisions related to me.  Sorry.  Again I get it, but I’ve had some dangerously stupid things happen in hospitals due to residents and I just don’t have the body and systems to withstand their screw-ups anymore.

I know that all sounds negative, which is a combination of my sense of humor and being in constant pain for a week.  I’m in a decent mood, I guess, all things considered, although it was pretty dark before and during this all.  I skipped writing it before because I just didn’t have the words, and during because I couldn’t type more than two words with all the things going on and the pulseox on my finger making typing really frustrating.  But there’s something I’ve been struggling with that I’m not sure is going away as it deals with this all in general and not just the surgery.

I didn’t think I was making it through this.  That’s a pretty common thing to think, I suppose.

Not so common perhaps is I was kind of hoping I wouldn’t.

I know that sounds “bad,” in a lot of contexts.  I’m just so tired, man. SOUL tired.  This is more than just the daily “fatigue,” a dainty word for the 100% fucking exhaustion that comes with this cancer and the chemo.  I’m talking tired of doctors and appointments and stress and chemotherapies and shitty marriages and whiners on Facebook and jobs I hate and cancer and every day feeling like a worse version of the day before and infusion centers and cancer clinics and being poked with needles and the looks you get as an outed cancer victim and watching important friendships drift away and not having cats and having a disease dictate the quality level of me being a father and this shit never fucking ending and drugs ballooning my weight so my self-image is so bad I don’t look in mirrors anymore and the effort it takes to put new bricks in the emotional wall and, and … and.

I mean it never stops, you know?  Even more amusing, in a dark way, are the 1-2 folks who bothered telling me some version of  “Jesus is just giving you what you can handle,” etc. Really?  REALLY?

Not even going there today.

I know this is all a self-pity spiral and best to avoid.  Not sure how to, though. I wasn’t stoked to do this surgery because it was risky and the point of living in this ridiculous way now is to stay alive for Ariana.  Who won’t appreciate any of it until long after I’m gone, if ever.  It’s just hard.  And staring at those ceiling tiles in yet another hospital room, again, it just makes you wonder at which point you get to just stop fighting.  Am I supposed to be excited now to start yet another new chemotherapy?  I’m sure this one will work, right? Another clinical trial?  I feel trapped into living.  That’s a REALLY weird situation to find yourself in.

More miles on the car, on the body, on the mind and heart.  How long does this have to continue?

I don’t wanna end this negatively, though, just not in the mood.  So wiping away the tears I will close with this instead, a humble thank you to the nurses who took care of me on the 6th floor of Rose Medical from the 18th to the 23rd.  I have never had a stay in any hospital where ALL of the nurses were so friendly, caring and treated it like more than a job, which a patient is so nice to experience.  I hope the universe thanks you in some karmic rebalancing far more powerful than what I am capable of with just a simple “thanks.” But thanks all the same.

Straightening out the curves.

Thanks to input from a friend I decided to move my blog from Blogger to WordPress, which has been pretty easy.  Not so easy, however, has been the emotional impact of having to go back and read the whole thing to tag everything right, get the formatting fixed, etc.

Whoops.

In doing so, however, I realized there is a lot of information missing, gaps in the story that I should probably fix.  I know I don’t have all of the information some want readily available — I think I’m a bad blood cancer patient, honestly.  Everyone I talk to leads with their numbers like they’re introducing themselves as Patrick McGoohan’s Number 6 from ‘The Prisoner’ … “I am M-Spike 1.9 IgG 2,400,” if you will.  Me, I barely pay attention. What difference does it make?  I know the trends.  I have an incurable but treatable cancer, which sounds good except when you’ve already blown through several treatments in less than that many years you start wondering just how “treatable” it is.  Plus if I knew my #’s better I’d be a walking ball of anxiety.

I often ponder putting together an Excel spreadsheet tracking it all, the typical “hi, I work in finance” answer to the world’s problems.  Much like a surfer waiting for a wave to ride, as anyone who partakes can tell you I’ve been waiting for a good solid Dexamethasone blast o’ energy to do that.  Have a box with all of the lab results and paperwork just waiting for the chemical motivation to kick in.

So of course I just got taken off of Dex.

Someday, Excel, SOMEDAY.

Dex, for those unaware, is the steroid they add to EVERY (seemingly) chemo treatment I’ve seen so far for multiple myeloma.  My understanding is it increases the efficacy of the chemo drugs, allowing for a lower chemo drug dosage?  Either way with very few exceptions I’ve been on this crap for almost four years now, and sometimes if you get the timing down you can be super productive.  I cannot tell you how many times I’ve re-organized our pantries, the garage, the spare closets … great drug if you don’t mind the weight gain and ‘roid rage that accompanies it.

Anyhow, we’ve entered rambling town, so let’s rein it back in a bit.  Like I was saying,  when reading back through things I found a lot of gaps and events that don’t make sense unless you know a bit more about what was happening at the time.  While I don’t write here to tell a clean, linear story, I bow to the logic that one needs to be told at least to a certain degree.  So a few things that I think will help color in the gaps:

  • Diagnosed in mid-2013 when some GI-related blood tests for recurrent diverticulitis showed red flags.  Went to RMCC at Rose for further testing, second opinion at the Mayo Clinic in Rochester, MN with Dr. Arleigh McCurdy.  Decide to have MC “take over” my care with the local oncologist, Dr. Alan Feiner, at RMCC in charge of administrating everything locally.
  • Began CyBorD chemotherapy, consisting of Cytoxin, Velcade and Dexamethasone.  Velcade was done at RMCC at Sky Ridge, the closest RMCC to my office / home.
  • Dr. McCurdy quit the MC for husband’s job but recommended her colleague, Dr. Joe Mikhael, at the Arizona Mayo Clinic.  Went down to meet with him, have him take charge of my care, and plan for a stem cell transplant.
  • Began therapy locally, and eventually anti-depressants.
  • Temporarily move to Arizona in February 2014 for autologous stem cell transplant (“SCT”) at the Mayo Clinic (Day Zero = 2/26/2014, some consider that their new birthday for some reason).
  • Back to Colorado in late March 2014 (30-day post transplant mark).
  • Summer 2014, 100-day SCT results don’t indicate remission, Dr. Mikhael begins Revlimid with Dexamethasone as a treatment.
  • September 2014, lower Revlimid dosage (too hard on my blood cell counts) from 25 mg to 15 mg.
  • January 2015, switch local oncologist from Dr. Feiner at RMCC to Dr. Matous at CBCI.
  • February 2015, Dr. Matous adds Ninlaro (oral version of Velcade) to Revlimid and Dex therapy.
  • Summer-ish 2015, Dr. Matous ends Ninlaro, adds Biaxin for a few months (BiRD).
  • Tried to wean off of Lexapro (the way you are supposed to).  Bad idea, turns out I was relying on it a lot more than I thought!
  • May 2016, start clinical trial for Pomalyst, Dex and ACY-241.
  • Mid-2016ish begin intravenous immunoglobulin (IVIg) since I’m getting sick (pneumonia) on almost a monthly basis.
  • October / November 2016, decide to stop going to Mayo Clinic.

So that should clear up a few blanks, anyhow.  Again it would probably be more helpful if I had all the #’s handy to show my stats at some of those bullet points, sorry.  I also feel like there’s a lot that happened in 2015 as well that I’m forgetting but I wrote nothing down — let’s just call 2015 a rough year and move along.  So mix in 4 hospitalizations for pneumonia in 2016, 3-4 diverticulitis attacks and here we are ready for a stomach surgery and off any chemotherapy (and out of that clinical trial).  That should bring things up to date, but thanks to chemobrain I may add to this later.

Oh yeah, the Mayo Clinic decision at the end there?  Given that I was in the clinical trial this year and Dr. Matous and Mikhael were pretty much eye-to-eye on everything to begin with, I made the call to can the MC trips after having to cancel two at the end of the year due to illness.  I love Dr. Mikhael but it became kind of silly for me to blow $1k or more every three months while in the trial to go down there and have him look over things that we couldn’t really change (since I was in a trial).  Perhaps someday I’ll go back but I have full faith in Dr. Matous and CBCI for now, and if I do another SCT it will be at PSL here with the CBCI crew instead of in Arizona again.

Shame, I’ll miss the banana bread french toast at Butterfields and Z Tejas.  And renting a Mercedes from Sixt — sometimes along with “food for the soul” you need an auto for the soul as well.

I wanted to address something from a comment last week because I’ve been pondering it the last few days.  In it the mother of a friend who is going through chemotherapy for another form of cancer noted that she didn’t know how I could “bounce back” from a failed trial.

Here’s the happy smiley cancer answer, which I’m posting in this blog from atop Mt. Everest after doing a free-climb without oxygen for blood cancers right before a helicopter whisks me away to a raw vegan meal so I have some energy for the 1,000k or whatever marathons are called now I’m running in this afternoon and then tonight where there’s a photo shoot for just my smile because gosh ducky darnit, I’m just so happy and lucky to have cancer and yay puppies!  There’s always another wonderful chemotherapy to try, and we’re all sure the next one’s going to have less side effects and I’ll be on it 20 years from now!  Hey here’s my two dogs now, Hope and Cure, to tell you in doggy sign language about how me having cancer has improved their lives!  So buck up, little trooper, there’s nothing to worry about!

Have you met that person yet?  They always seem fake to me.  I know that’s unfair, but I can’t help it.  Nor can I help wanting to punch them in the nuts.  People like that, in situations like this, make you feel even worse than you normally do in my opinion.  You can’t really say anything either, because we’re all fighting the same battle.  Hell I envy those people, although I question whether they really exist — either way it doesn’t work for me.  Either it feels like I’m lying to myself, or I’m lying to myself.  So how do you really deal with bad news on this wonderful path we’re on?

Anyways, here’s the secret:  I don’t think about it.

So just don’t think about your cancer, folks.  Next question?

Really though, that is the answer.  This is a horror show that never ends.  It doesn’t take a day off.  No matter what I do this cloud doesn’t go away.  It’s in every car I drive, every waiting room, every ceiling tile I stare at in a hospital.  It sits next to me at lunch, picks the radio station and next song on my commutes.  I strap it in right after Ari is in her car seat, and I tuck it in at night right next to me.  In fact there’s only one place I’ve found so far it doesn’t penetrate on its own, and I guard that jealously because it’s the only real relief I’ve had in almost four years.

I will die from multiple myleloma, most likely.  My daughter’s daddy will be taken away.  And if that’s not bad enough, because I’ve always had guilt issues, I feel a CRUSHING amount of guilt over that fact on a daily basis (the daughter bit).  It taints every possible thing I do, bar none.  So I’m driving to, say, work, and instead of the usual daydreams you’d get doing that I get a sudden image of my daughter crying in some hospital about why daddy didn’t take care of himself better so he didn’t die.  Or I replay actual conversations I’ve overheard between my daughter and wife about how daddy can’t play right now because he’s sick and needs his rest (that happens more than I’d like).

I can keep listing those, but this isn’t Monday Depression Spiral with your host, Rich.  How do you deal with the constant stream of disappointment?

Simple. You don’t.

What else can you do?

Should I blast out of my chair in the doctor’s office, shake my fist at the sky and scream “Why, WHY??!!” in some Oscar-winning performance every time we swap to a new chemo?  That just sounds exhausting.  Maybe I could shout about how it’s all so unfair?

So I suck it up, get in the car, try not to think about my daughter and if I do, save the tears until the sunglasses are on and just drive, man.  Music up, all energy on banishing any thought.  Just another day.  Don’t think.  Do.  It’s just a day, just a moment in time.  Because in the end, and this is really the point, I have to function, regardless of what LabCorp or a doctor says.  I have a kiddo, and a mortgage, and responsibilities.

I am going to die from this.

“Oh well.”

Does that seem cavalier?  I’ve been dealing with the concept of my own demise daily since I was diagnosed.  I don’t want to die (well mostly I don’t), but I’ve had almost four years to come to grips with the concept.  I’m not surprised anymore.  Trust me I’ve gone over every possible permutation, scenario … it just doesn’t bother me a hell of a lot at this point.  So what is the point of stressing about a test result, or a new chemotherapy regimen?  I worry more about the logistics and side-effects; the need itself is no longer a concern.

A failed test?  Man I’ve seen so many horrible test results in the past few years it’s almost funny to me now.  “Yep, still on the train to Suckville.  Next.”  What else do you summon in protest when they’re ALL bad, except dark laughter and a few tears snuck in when nobody’s watching?

I have my moments.  I have entire weeks, as my wife can tell you.  But most of the time, regardless of how dark it gets inside, I try to keep it positive.  Who wants to be around negative people all the time?  So I tell black jokes about my health that are probably uncomfortable for people to laugh at (my wife hates those) but make me smile while I try to ignore the situation and just do what I can to make it through the day.  I don’t think more than a day ahead as I’ve found that leads to thinking about things that can blow major holes in the emotional walls, and I breathe a lot.  Lots of sighs too.  You can’t really do anything else.

So that’s the answer.

You get used to it BECAUSE YOU HAVE TO.  Because responsibilities, and guilt, and all the other fun things you’ve brought as baggage (or wreckage) to the party.  Because if *I* can’t deal with it, how will anyone else dealing with my life?

Tony Robbins, I am not.  Sorry.  I’ve been asked some permutation of this almost since the beginning and it’s the only answer that rings true to me anymore.  You deal with it because there’s no other choice.  If you want to take into that cancer fighter’s angst and let the world know how you’re going to beat this goddamn thing, more power to you.  If you want to stay in bed all day bemoaning your fate, hey, that’s your life choice and it’s not mine to criticize — trust me I get it.  Me?  I just try not to think about it.  I already have, do, will.  I’m far more interested in the few parts of my life I can salvage outside of this shitshow than to dwell on it any more than I already have to.

“It” doesn’t get better.  I do, at rationalizing, being pragmatic, avoiding the disasters and trying to stay positive, if possible, but at the least stay standing.  I can’t do more than that.

“Why didn’t daddy take better care of himself so he’d still be here?”

I do that to myself a lot, have that conversation that is. This situation constantly leads to these sketchy little daydreams, envisioning on a micro level what the world will be like when you’re gone. I think I did that before this all began, but death takes on a much more real and imminent feeling with a cancer diagnosis.  It causes guilt, immense amounts of it, that are totally unfair but that you have to deal with.  I wonder sometimes if a lot of folks sadness about cancer comes from that.  On the bright side at least I know this is just a mental game being played and to not wallow in it too much.  But if you can’t accept the truth, as painful as it is, then what can you accept?

It’s because I just didn’t, Ariana.  Because I was selfish.  Because I knew smoking and chewing tobacco was a bad idea and did it anyways.  Because I knew that that food was fucking garbage but ate it anyways.  Because I chose to ignore that all the chemicals and preservatives and food colors were most likely not doing me any favors.  Because I had wifi and wireless signals caressing my DNA for 40+ years and who knows what impact that had.  Because I drank too many Diet Dr. Peppers and touched the wrong bathroom door handle. Because I never thought it would happen to me.  Who knows?  In the end because I was weak somehow, and the giant invisible hand of Darwin or [insert deity here] decided to clean up the gene pool.

And I will be sorry, and feel a guilt so large that nothing can assuage it, every second of every day, until the day they take me from you.  But until then I’ll try to just breathe and do what I can to stick around a lil’ bit longer, spoil you a bit, and see what happens to us.

So here’s to the next chemotherapy, bring that fucker on.

2017 With a … Bang?

Going to keep this relatively short, which for me is just a small novella instead of the first seven letter volumes of an Encyclopedia. Do they still have those btw, or has Wikipedia destroyed that?

Been thinking about this blog quite a bit, specifically that I think I can handle writing here again without the emotional side-effects being quite as severe. As someone who spent a good portion of their adult life writing and blogging (not here), I found that sharing everything in almost a stream of consciousness sort of “core dump” made for good reading and valuable introspection but at the cost of opening a Pandora’s Box I couldn’t control emotionally. When I was just writing about dating, poker and other silliness that was one thing, but the issues revolving around cancer, and what’s more having a terminal diagnosis as the parent of a young child, became something well beyond what even good anti-depressants and anti-anxiety drugs could cope with. And at the end of the day I still have to function, something I found almost impossible when I forced myself to think too much about things (I’ll write about that concept some day, come to think of it).

I need a way to keep in touch with folks because I simply can’t do it now even with the relatively small circle of close friends and family I keep in the loop. the energy simply isn’t there, as ridiculous as that probably sounds to folks who’ve never experienced what the side-effect word “fatigue” mean thanks to a disease.  Facebook is nice for that, but limiting in ways I just don’t enjoy — so like, while I do believe you have the right (within reason) to put whatever you want on your own FB page, sometimes I feel what I write on there regarding this particular nightmare is a fucking bummer that’s both too personal and, paradoxically, not personal enough. So I decided on two things — uno, I’d go back and post here any cancer-related FB posts for continuity (most from 2016, although I’ll have to go back and see what else I skipped when I have some time), and two, I’d just post executive summaries or TL:DR versions on FB with a link to here. That way people have a choice of how deep down the rabbit hole they want to go with me.

This is like an epiphany I’ve had recently.  It’s probably in some social media how-to book from a billion years ago written by a monk who had taken on a lifetime vow of silence and lived in a cavern towering over whatever the hell that area he was in was called back when there was just one continent, Pangaea, which may honestly be complete bullshit because when I think about it the only way I know that is from video games that really probably shouldn’t be taken as gospel as for being a reliable way of learning the history of your own planet but yeah so anyways this monk who noted that using this exact same method, presuming that someday someone developed the concepts of digital, well, anything, or electricity for that matter, much less global communications systems, the internet, and indeed not only social media but also specifically Facebook and Twitter, would be really nifty. And here I am thinking I’m a fucking genius.

* The preceding paragraph may have been brought to you by the letters M, M and J.

Further, if I’m being honest, I’m also not being good about my book — which is a problem since the chemo-brain has really been terrible lately and I’m forgetting more than I’m remembering some days. I had a few friends over for the UFC 207 PPV last weekend and my ability to recollect fighters names is just gone to the point where it was really embarrassing. I know people get it but as someone who’s never had looks or a trust fund, intelligence was one of my few good marketing points (kidding) that allowed me to feel at least somewhat good about myself (not kidding) and now that seems to be going too. More than a little concerned about this, but nothing I can do about it. Anyways point being I’m always randomly coming up with things I want to touch on but don’t write them down, which means those thoughts are just gone now thanks to this awesome ability to 100% forget them a few moments later. As I solidify the structure of how I want to present things in the book so the flow makes sense that’s just not OK anymore.

Going to go backwards in time from this morning (BTW linear time is nothing more than a tool for me, so sorry if I jump around a lot) so a few things make sense. Around Thanksgiving I had another attack of diverticulitis, something I have suffered from for over a decade.  Usually attacking between 0-2 times a year, I get this pain in the same exact spot in my left lower stomach quadrant every time, go to this amazing GI guy (same guy who figured out I had cancer) at Rose who orders tests and a scan or colonoscopy if it’s been too long and then prescribes some antibiotics to get rid of it.  Problem is I’m on attack #4 by around Thanksgiving for 2016, so when I call to find out what he wants me to do he calls me back from vacation to tell me it’s time to go the surgical route and gives me the number of a well-respected surgeon here.  No date yet, although it’s looking like mid-January — the surgeon wants to get in touch with both the GI doc and my oncologist at CBCI to make sure he adjusts the surgical plan to be safe given my disease.

As part of that plan I had a hastily-scheduled meeting with my oncologist Dr. M. today (who is also in charge of the Colorado part of the clinical trial I have been in).  Given my numbers just going sideways and the need for me to be off chemotherapy for months due to the surgery he has taken me out of the clinical trial for good.  I think it’s too soon for me to have any perspective on that decision, but when my wife texted me asking how I felt about it my first reaction was disappointment.  In no specific order,

  • The numbers will start going up again.  The only way to spin that positive is that my oncologist wants me to get into a clinical trial for Darzalex (daratumumab) that is apparently hard to get into, and one of the requirements is the #’s have gone up from a previous treatment.  That sounds clinical but in real-speak that’s “you’ll be off chemo for two months with cancer rampaging through your system and the associated risks. Like death.”
  • Even if I don’t get into that trial, he wants to start a Darzalex-based treatment.  This is a newer drug, approved in 2014 or ’15 stand-alone and just two months ago for use in the more common cocktail approach taken with multiple myeloma.  This is one of the new monoclonal antibody treatments that have been in the news so much.
  • My contact will switch from the research nurse, who I loved, back to the oncologist’s coordinator, who I also loved but I’ll miss the research nurse.  Sarah rocks socks and she’ll be missed, although she promised to come by and say hi when I’m in clinic.
  • Yet another failed treatment.  It’s impossible to gather up hope when I’m on what, #6 now and well into the experimental and newest stuff?  Normally I like new things.  Like TV’s.  Or food.  New things like chemotherapy where nobody knows what the long-term effects are (or sometimes the short-term) are a lil’ scary.  So is mixing them with experimental stuff in a clinical trial to see what happens.
  • At least I’ll be off Dex for a few months.  The clinical trial had me on the max dose and I was NOT enjoying it or any of the side-effects.  Nor were the people around me, although I feel like I roid-raged a lot less this time than when I was on this dosage level back during chemotherapy #1 (CyBorD).
  • In fact, this will mean not taking 94 pills a month, an end to the monthly 24-hour urine collections, the EKG’s, etc. for at least a few months.  That doesn’t suck.  Actually I didn’t mind any of it except the pills and the urine collection, although I’m still on over 100 pills a month even without the chemo.  Which reminds me that I fucking forgot to ask which of the prophylactic meds I was taking due to this chemo I can get the hell off of now, grr.
  • Darzalex is IV-based.  On one hand that’s fine since I don’t really care and have the port now (plus two other IV’s I do anyways for all of this), but on the other due to CBCI being 30 minutes from my house and my office that means more missed work.
So I don’t know — mostly negative but with cancer I’m always trying to check myself because it’s too easy to just see the negative, you know?
So that’s the short-term stuff.  I have some things to jot down about the holidays, my marriage, Ariana, marijuana, etc. but it’s going to need to wait since this is already a novel and as much as crying at my office desk SOUNDS fun I think I’m going to pass today!  Two venti triple no-foam soy lattes on the back of 40 mg of Dex last night and this morning’s news isn’t really placing me in a reflective serene mindset anyhow.