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.

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.

 

 

Saved by the … 1970’s?

I’ve been somewhat avoiding this entry, as ridiculous as it may seem, simply because I’m scared, quite honestly.  Scared about seeing what I should, or want, or need to put down here.  There’s a stark reality to a word on a page.  Something CREATED that you can’t just stuff back into a box.

This is a travelogue, if you will.  Which makes me a tour guide of … myself?  I’ve always found that an interesting viewpoint, whether as a reporter or editor or blogger.  If you’re reading this you’re on a journey with me, and perhaps similar to the anticipation we all get wondering if the traffic you’re stuck in was born just over the hill in smashed cars and blood on the pavement, I have to think in the back of someone’s head reading this blog there’s a knowledge of what we are going to find over the hill.

Here’s the difference between you and I, however.  You read these words, their order and meaning and message devised in my head and placed here as best I can.  Perhaps you get hope from them (that would be a feat), or more likely some information you didn’t have about Myeloma.  Maybe you know me and this is how you stay updated.  For some I know there’s an empowerment in reading and interacting with others sharing their fate, which is why I make sure to answer (I may miss 1-2, sorry) every comment personally.

But for me this thing is something totally different.  It’s truth.  It’s a love letter to someone you’ll probably never meet.  It’s comprised of words once spoken outloud, given birth, that become unavoidable, and once created I can’t shy away from it.  Just the opposite, I re-read these entries ad nauseum.  If they make me tear up I just keep doing it to inure myself, to explore, to learn, to understand me through this process.  To remember — it’s weird going back two years and reading.

And hey, side effect to chemobrain, I have such a hard time recollecting certain things now it’s like reading a whole new blog, laugh.  I should start re-reading my favorite authors come to think of it.  Anyways …

Long way of saying why I haven’t updated in the last few days.  That experience can be so taxing that the anticipation of it can be too much sometimes, especially when my number one method of coping is to compartmentalize and seal until I feel it’s safe to open the vault door and peek inside.  These entries are often the emotional equivalent of blowing open all the cell doors in a Brazilian prison and seeing what happens.

Don’t ever Google “Brazilian prison riot” by the way.  That’s one of those “what’s been seen can never be unseen” parts of the Internet.

Wednesday morning I met with Megan, the nurse practitioner on Dr. Matous’ team (and also with another member of their team sitting in who works with Sonja, the team’s nurse navigator — each doctor at CBCI has their own group of folks).  Megan actually is the reason I’m at CBCI — she’s a friend of a friend’s sister who related to her some unsatisfactory experiences I had had with my former local oncologist and got me in to see Dr. Matous.  Not only is she as sharp as they come on Myeloma but there’s also an underlying level of tangible “caring” that I rarely see in medical professionals.  I consider myself lucky to have met her, quite honestly.

So we have a 45 minute meeting to discuss some things which I’ll save you the narration of.  Here’s some “highlights,” although that’s certainly an odd term for it:

  • We are definitely in the danger zone.  Queue Archer pestering Lana.
  • We are going to continue with the Dara/Rev treatment for a few more weeks (4?) to get some more data and because it’s seemingly very effective on two of the three metrics you watch with my form of Myeloma (IgG, M-Spike) even if the Kappa is going the wrong way.
  • We’ll be doing weekly appointments with a doctor and weekly Myeloma tests now (monthly before).
  • PET Scan time.  Only had one before so not entirely sure what this tells us, but that was the plan BEFORE I told her about some of the pain I’ve had bone-wise lately (skull, lower back, etc.) and once related became even more urgently needed.
  •  The next step for me if this is not sustainable is probably going to be something called PACE (we’ll discuss that in a minute).
  • After Dara, or PACE, I cannot be off chemotherapy.  Every time I have my numbers go to Hell so fast you’d think they had a VIP invite.
  • The step after that *may* be some sort of CAR T trial.  CBCI is most likely going to have one but given the previous bullet point I may need to travel for one to get the timing right — again I cannot be off chemo given what we’ve seen so far.
  • There’s no good way to prop up hemoglobin counts like you can with white blood cell counts, apparently.  i.e., Neulasta, IViG, etc. There used to be and it was a standard of care, but due to heart issues it’s use was severely restricted.
  • An autologous stem cell transplant (someone else’s stem cells) may be on the plate for the future.  Risky and a huge time commitment among other things.  Didn’t even know they did those for Myeloma.
  • I managed to make not one but two medical professionals tear up with one comment.  Basically that I just needed 13 more years, even if it was slogging through chemotherapy 24/7 to get there (we had been talking about living on chemo for the rest of your life versus not even a maintenance regimen).  From knowing me Megan knew pretty much immediately that that was when my daughter turns 18 and explained to the other nurse in the room, who has a young child like Megan and I both do.
  • One of the reasons my cancer may be so frustrating to deal with chemo-wise is perhaps there are not one but TWO clones at work.  That could explain the weird way the Kappa is not marching in step with the M-Spike and IgG.  First time I had ever heard that was even a possibility.

As I remember it those are the main points we hit.  Couple things to dig into from that list.  First, Megan was telling me how she had talked to Dr. Matous the previous evening and he knew my numbers off of the top of his head.  She let me know that’s not the norm and that he cares about me.  That may seem like a very small thing in a very scary list of things, but it meant more to me than anything else said yesterday.  I have a hard time buying that many medical professionals even read this but man, you want a patient to believe in you?  That’s how it’s done.  A little caring moves mountains.  You want someone fighting for you in this, not doing their day job, capiche?

Secondly, PACE.  I checked with a friend with Myeloma doing significantly better than I am and that was news to her as well.  I also don’t recall that one off the list in any doctor’s office of potential treatments.  I’m reasonably sure, since I’m somewhat well-read in Myeloma, that there’s just not a lot of talk out there on this one and doctors don’t even mention it given why it’s used.  The key word I kept seeing over and over again is “salvage.”  It’s a salvage chemotherapy, so in a way a hail Mary pass.  At least that’s how this feels.  We’re not calmly sitting around pondering quality of life issues over IV versus oral chemos and what’s hot now, we’re calling the National Guard and getting ready to light up Berkeley like the Branch Davidian compound in Waco.  It sounds like there’s some variance in the exact cocktail used with this (Velcade or Thalidomide, for example).

So DT-PACE:

  • P = Cisplatin or Platinol.  Mmmm, 1978.  Cisplatin (actually discovered in 1845) is licensed for medical use.  1978: the Sex Pistols play their last show, the Blues Brothers perform their first (on SNL), Van Halen and the Dead Kennedy’s debut albums, and most importantly Iron Maiden hires Paul as their lead singer and records a 4-song demo including Prowler.  Best band ever.  EVAH.
  • A = Adriamycin or doxorubicin.  What year did Nixon resign, Cher file for divorce from Sonny, Neil Peart join Rush and the Ramones perform for the first time at CBGB’s?  1974.  Those two drugs are the same, as far as I can tell; Adriamycin was a trade name for doxorubicin.
  • C = Cyclophosphamide.  Set the Wayback Machine for 1959, Peabody.  Jimmy Hendrix buys his first electric guitar, my dad’s favorite Buddy Holly goes down in a plane crash in Iowa along with the Big Bopper and Richie Valens, and Cyclophosphamide is approved for use.  This one I’ve had before when I first was diagnosed as part of the “CyBorD” triplet (Cyclophosphamide, Velcade (Bortezemib) and that wonderful (not really) Dex.
  • E = Etoposide.  Welcome back to ’83, when Thriller debuts at #1 on the charts, Mick Jones is kicked out of the Clash, the members of KISS take off the makeup, the first Phish show happens and Etoposide hits the market.

The “DT” is Dex and Thalidomide (predecessor to Revlimid/Pomalyst) but it seems like there are variations on this theme (using Velcade instead, etc.).  Only recognize a few of those names?  Yeah me too.  I wasn’t sure what Megan meant when she said it’s an old-school chemotherapy.  More like 800 of them.  At once.  96-hour infusion, only can do this once or twice due to the severity.

In looking at that list maybe I should show up with a giant afro and bellbottoms humming some BeeGees.  CB?  Still got that pink afro wig?

How’d we get here seemingly out of nowhere?

I know the answer, a combination of semi-effective treatments and a few ill-timed but necessary chemotherapy holidays.  I’m still suffering from the whiplash, however.  I went from the, for lack of a better analogy, “softcore” chemotherapies to the “XXX scar-you-for-life and terrify the kids while it kicks your dog” chemo with little to no warning.  There are so many questions this is raising and emotions churning and frothing like some stormy seas out of a novel where people say “yarr” and the great white whale appears on the horizon that I don’t even know which way is up anymore.  It’s given birth to a few feelings, however, that stand out:

Yarr.  I just wanted to say that again since it’s a joke between my daughter and I.

“Knock knock.”

“Who’s there?”

“Interrupting Pirate.”

“Interrupt –“

“YARRRRRRRRRRR!”

Cracks me up every time.  Sorry, your list:

  • I’ve never “feared” my cancer.  That’s an odd realization.  I thought I did, for sure.  Now I fucking do.  So if someone was just trying to make a point with this to not take cancer lightly, I get it.  Seriously.  No I will not start going to church, please stop asking.
  • Taking that a step further, I’ve never felt the grasp of death before.  I think I know more about impending doom than non-terminal peoples after four years of Myeloma, but there’s a big difference between having a concept in your head with some nebulous future date (“eventually this will probably cause my death”) and what I feel now.  It’s gone from 2-D to 3-D, if that makes sense?  I feel like we’re in the “get the paperwork in order” phase of things and I can’t escape that feeling.  Not that my thoughts on it have changed at all (only really care due to Ariana and her future, yada yada yada), but I thought I’d have a bit more time to get there.  That feeling is now gone.
  • There’s a very disappointing jealousy I’ve hid from everyone for a long time.  I get the feeling all of us doomed do this even though we don’t talk about it, because it makes you feel shitty.  It’s being jealous of survivors, those for whom all of the chemicals and years worked.  I hate that because it makes me feel petty and selfish, which is logical.  It’s just so hard reading about how someone survived on Revlimid for 20 years or is now in remission or what have you when you aren’t.  But it’s a full disclosure sort of blog, so sorry for admitting what most of us feel but won’t talk about.

So that’s where we’re at.  Well I’m at; hopefully you, my friend, are not here with me except as an observant whisper in the dark.  I won’t be dropping dead tomorrow, I doubt, but in four years we’ve torched quite a bit of the new therapies and standards and we’re worse off than when we started.  What’s left looks and feels pretty grim to me right now.

Sure there’s hope.  I’m still fighting along with the best medical team on the planet as far as I’m concerned.  I’m taking the drugs, making all of the appointments — ask around and folks will tell you those are the danger signs of giving up (no shows, not taking the drugs, etc.).

I figured something else out today.  My father, upon hearing my diagnosis four years ago, has mentioned a few times since that that was the only time he’s seen me scared.

I realized today I’ve just learned to hide it better since then.

PS:  You know your cancer’s rare when the spellcheck keeps correcting it to “Melanoma.”

Watch, I’ll have that now too and we’ll all go “how ironic.”  Knock on wood.

Last thing that I just recalled.  Don’t read more into this than is necessary but with all these thoughts of death and the timeline feeling like it’s shifted I came up with what I want on my tombstone.  “End of Line.”  Sure, put some family stuff above that, but that needs to be on there.

Tron dork, what can I say.

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.