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.

Deadpool on cancer is spot on.

“Deadpool” gets cancer right: Debunking the “hero” survivor myth, one smart-aleck joke at a time

A-fucking-men.

There is not much more depressing to me, and other folks with cancer I talk to, than the pressure and sense of failure that comes with not being one of those “Since I got cancer I’ve climbed Everest and become a marathon runner and only eat vegan and quit my job to become a blah blah blah …” I wish “they” would get rid of that unrealistic model because you really do notice if you’re not that person, not only personally but in others’ reactions. Shit I consider a heroic day if I can get by with only two venti lattes to keep from falling asleep while driving thanks to the drugs they have me on and the disease itself so I can get home to play with my daughter for an hour while hopefully no needing a nap during my quality time with her. While hiding tears because I’m terrified of what my likely death from this is going to do to her. Add that to feeling guilty about being a shitty friend and husband because I’m so tired and so introverted now it feels like the effort is just more than I can handle, constantly having to break commitments, having to give up everything I cared about doing in life like travel, diving and teaching diving thanks to a suppressed immune system, getting to witness my brain deteriorate from chemotherapy (“chemobrain”), weight gain from the meds, you name it.

Guess you don’t get a cape for that stuff, though, right?

A reality check.

Sorry, as usual, for not updating more.  The holidays were terrible and caused so much stress (family stuff) that it felt like all I could do just to survive, much less dwell on everything else.  I think I mentioned it in the last entry, perhaps not, but my mental health effectively waxes and wanes with whether I can keep the emotional walls up and not really think about the horror of this diagnosis.  When other things damage the wall, it all comes flooding back.Nothing much is new, other than a better yet sadder understanding of those around me.  I wrote a letter to a parent that I never sent to clarify my thoughts, and realized it would suffice as an entry here for now.  Life is OK, or as OK as it can get when you just step around the elephant in the living room and try not to acknowledge it’s existence. Anyways, a portion of that letter …

I have a rare and terminal form of cancer.  That isn’t grand-standing, “pulling the cancer card” or being melodramatic, it’s fact.  While treatable and thankfully caught early, unless something changes at some point we will not be able to keep these numbers down and this disease is going to start attacking my organs, assuming the damage it is doing on an ongoing basis to my immune system doesn’t do me in first.  As you may know, what generally kills you with cancer isn’t so much the disease itself but what it allows to be done to your system.  I got to experience that firsthand when I was in the hospital for four days with pneumonia recently (one of the primary killers of people with cancer).  In fact I think, of all of the time in the last few years of staring at hospital ceilings while trying to maintain my composure, that it really occurred to me that this is probably how it’s going to be at the end.

Every time I get a runny nose I have to think about that.  I can’t really go to children events safely, although I try to for my daughter’s sake and my own, mentally.  I feel like I sit on the sidelines too much as it is with her due to this nightmare.  I actually risked my life just to go on that Disney Cruise for God’s sake – probably the worst idea, from a health stand-point, I’ve had to make.  But I had to balance whether it was more important to take a risk and make at least some memories with my daughter versus not knowing if I’ll even be around a year from now.  I’m not sure if you know what that kind of a decision is like, but I hope you never have to make it.

As best as I can describe it, when I was diagnosed the world went from spinning on its axis at 600 mph to 0.  But just for me.  I watched as everyone else got to continue their lives like nothing was wrong.  Except mine had just ended.  I suppose that’s what it’s like in prison, too.  Staring out the window at a world that has stopped for just you while everyone else gets to go on living like nothing happened.  With most things, as I’ll touch on in a moment, I’ve just given up and accepted my new role.  Some stuff, mostly related to Ariana, I still refuse to even if I should.

The sad thing is, my decline towards the end could start in earnest tomorrow.  Or the next day.  Next week, next month … whenever.  No warning, just the starting signs of the end.  That’s the other fun thing about myeloma and cancers in general, and why the local oncologist wanted a deeper response than the Mayo Clinic.  As long as this is in my system I am in imminent danger.  

Granted, you and I don’t stress about a lot (pretty sure I inherited that from you) but that’s one that keeps me up at night.  Every night.  And it probably always will.  People talk about living with cancer a lot that have it and in the literature about it – what people who don’t have it rarely understand, however, is that it’s a mental and emotional battle, and honestly, most of us just give up.  I’ve already met people who are dead now from this and other forms of cancer.  Did you know that?  I’ve met folks who have given up and just refused to deal with chemotherapy anymore.  I keep going for my family, but I’m pretty sure if it wasn’t for Ariana I’d be in that boat.  What I’ve learned in part by doing so, however, is after a while you become so numb from dealing with the horror that you just don’t have it in you to do so anymore, and you get a bit colder, a bit more aloof, a bit quieter.  It doesn’t ever go away, trust me.

I vaguely remember you making a comment, I think to Amy one night when we were all together, about how when I was diagnosed was the only time you’ve ever seen my scared.  That fear has never gone away.  Not for a week, a day, a minute.  In some ways it’s hardened me, although it’s made me so aloof in doing so that I have issues communicating with anyone I’m close to anymore.  Imagine what that kind of fear is like, if you even can, that fear you saw a glimpse of.  Imagine living with it as a constant companion.  Look me in the eye sometime, I bet you see it.

Getting back to Ariana and this, I have had to enter into therapy and take fairly high-dose anti-depressants simply to get through the day mostly because of her and how the cancer is going to affect her, not me.  I have had to learn that if I focus any longer term than the current day I actually begin to emotionally break down – the thought of orphaning my daughter, which is one of the most traumatic things a child can experience, starts flooding into my head.  Every song on the radio seems to be about loss, every comment on a podcast I’m listening to applies, every thought that enters my head … it’s so upsetting to me that it actually physically shuts me down.  There are nights it hits me out of the blue when I have the strength and energy left to put her to bed and read to her.  She’s at the age where she’s started asking questions about why I am always going to doctors and why we were in Arizona, and I don’t even know what to tell her.  Sorry, honey, daddy’s dying?  She cries when she can’t find her blanket, how will her three-year-old mind work with that?

Most nights that I put her to bed I then go to my room and cry for a few minutes.  Even Amy doesn’t know that one, she just thinks it’s when I go to the bathroom.  Or she does and just respects me enough not to ask about it and risk upsetting me when I imagine she notices how glassy and red my eyes are.

You may or may not know this, but most children effectively wipe their minds of memories around age 5.  Did you know that the top goal in my life is to make it past that age, simply so she remembers who her father is?  Have any idea what it’s like waking up every day and that’s your entire purpose in life?  To make sure you live long enough that your daughter remembers you?  I talk to other parents and they are already worried about things like high school, the internet, the opposite sex, drugs and alcohol, accidents, driving.  They say this shit to me and I can’t even relate.  I just want to live long enough to spend more time with her.   That’s it, the rest of life can just go away.  It’s all I want.

If you want to know what that’s like for a few minutes, write her a letter from her dead father.  Try to figure out what you’d say so you can get that minuscule an amount of peace that your 3 year old will someday know what her father was kind of like.  I have a stack of those in a safe deposit box for her, did you know that?  The tickets from our trip to Tiny Town are in one, and the stubs from our day at Disney World.  Pictures, and lil’ trinkets and things.  Pages of letters with who my favorite bands and their songs were, stories from when I was a child, life lessons, but mostly just how much I loved her.  Because chances are there will be nobody to really tell her any of that, at least in the way I wanted to share it.

So like I said, someday I am going to wake up to find that the myeloma has begun my end.  Again, that’s just fact.  I live with that every single day.  It’s why I have to take Xanax most nights simply to sleep and stay asleep, because I’ve found if I don’t that when I wake regularly at 3 am to the thought of “I have cancer” because the drugs I take to battle it make me sweat like someone poured a bucket of water on me in my sleep, I have a prayer of getting back to bed and at least getting a little rest.

I also live with the fact that, from everything I read, the end via myeloma is extremely painful and unpleasant.  The funny thing is, of all the horror involved with this that’s the part that worries me the least.  I guess I just haven’t thought about it enough, but I’m sure at some point that will start grating on me too. 

Now about those treatments, I take chemotherapy drugs, as you know, 21 out of every 28 days, and several ancillary drugs to keep me relatively safe while doing so.  Even at the lower doses I now take, the steroid keeps me from sleeping well (and I think causes that sweating issue) and causes irritability issues that force me to restrain myself constantly when dealing with everyone from Ariana to random strangers.  The Revlimid is even worse.  I am tired from the minute I wake up until the minute I go to sleep.  I have found that unless I drink a good 32 ounces of coffee a day (which is why I now bring a French Press to work every day as you’ve seen, since that’s over $20 a day at Starbucks otherwise) I cannot make it until 5 pm.  As it is, even with the caffeine by the time I get home I am rarely able to do more than sit on the couch even though I only have an hour or so with Ariana a day before we have dinner and she goes to bed.  I try to come up with games for us to play where I can lay down, and a lot of nights I’m so tired that even though my favorite part of the day is getting her ready for bed and reading to her and telling her stories like I sort of remember you doing for me, I just don’t have the energy.

Every month I have a 30 minute phone call with both my pharmacist and Celgene themselves to get my next prescription.  I get to talk to a stranger about how yes, I know if I have unprotected sex I’ll give birth to a child with birth defects (Thalidomide babies, since Revlimid is a Thalidomide/Lenalidomide extracted drug).  Yes I know if my daughter manages to get a spec of Revlimid in her mouth it could kill her or permanently disable her.  Etc. etc.  It’s a fun phone call.  Oh, the chemo also causes a side effect (exacerbated, apparently, by the stem cell transplant) affectionately called chemo brain.  I used to be considered sharp, had a great vocabulary, etc.  Now I stay silent a lot more because words that used to come easily to me are just gone.  Memories are blanked, and I just stare emptily at people who bring up things we’ve done together that I for the life of me can’t even picture much less remember.  My internal calendar is totally warped to the point I have to put reminders in my phone just to remember basic stupid things.  It’s embarrassing at best and thoroughly depressing at worst.  I always thought my brain was about all I had going for me in life, and now that’s crumbling apart.

Once a month, I have to go all the way downtown to get an IV of Zometa (Zolendronic Acid, I believe) because one of the fun side effects of myeloma is the damage it does to bones.  The nurses regularly have to poke me multiple times and comment how beat up my veins are, and at some point (or perhaps when they change my chemotherapy to an infusion-based instead of oral regimen) I’ll have to have a port put in.  I think mom had one of those for a while with her heart troubles.  Imagine spending the rest of your life with a plastic hole in your chest, though, just to stay alive a few more days.  Anyways, the Zometa infusion is fine.  That is, until about 24 hours later when the pain and flu-like symptoms start, and then the next 48-72 hours are a nightmare.  I don’t think its’ pain on the level you’re dealing with with the sciatica (sp?), as nerve pain is about as bad as it gets.  But there’s no escaping it.  Your actual bones hurt, and for some reason so do most of your muscles, which tighten up so bad it’s difficult to walk or even stand up.

Did I forget the best part about that infusion?  Zometa apparently has a 5% chance of causing osteonecrosis of the jaw in people who take it.  You and I both have a pretty solid background in statistics – how many treatments do I need to take before I’m at such a high risk it’s almost a certainty?  Do the math.  Don’t share it with me, I already know.  Imagine that dental appointment though, when your dentist tells you that your jaw has begun irreversibly rotting and they’ll have to start a lifetime of cutting away chunks of it.  And people wonder why horror films don’t really bother me anymore.

One more fun and recent addition is they noticed when I was in the hospital for pneumonia late last year that I don’t get enough oxygen at night anymore.  After completing a sleep study with Parker Adventist Hospital and going over the results with a doctor, I am now going to have to start sleeping with a CPAP device.  That’s a machine with a facemask on it to keep me from dying in my sleep, apparently.  The hits just keep coming, as they say.

I won’t even get into the less polite side-effects like the constant stomach problems, etc.  But believe me the list continues.  There is one last fun one, which is not only is my system effectively incapable of losing weight, I gain it at the drop of a hat due to the steroid and the anti-depressant.  I was in the best shape of my life when I was first diagnosed, if you recall.  Now I have to hang my head and shop in the XXL racks and deal with the embarrassment of family pictures and tight clothes.

So what’s my life like now?  Most weekends I spend sleeping late and napping.  That’s the only quality time I’m able to get with my daughter but I rarely have the strength and energy to do that.  I spend most of that time, when I’m awake, trying to pretend to be normal and thankful she doesn’t notice yet, and trying to cope with the fact that at some point she won’t want to (or be able to, because I’m gone) spend time with me anymore and I’ll have permanently lost that due to this disease as well.  In other words even the time I have now I can’t spend the way I want.  I can’t take her the aquarium because I can’t be in shoulder-to-shoulder crowds of people due to my immune system, nor do I have the energy to deal with it anymore most days.  We eat at slightly odd hours to avoid crowds in restaurants.  Hell I’m afraid to kiss my daughter half the time because like most kids her age she always has some sort of respiratory thing going on.  I have to wash my hands like someone who has OCD and carry a bottle of hand-sanitizer everywhere I go.  I don’t even drive my family around most of the time – I’m so tired I’m afraid I’ll get us in an accident.

I say this so you understand that the word “fatigue” rarely sends the message of what it actually is like to live it.  Fatigue always sounds a little tiring, not like something that is actively ruining any enjoyment you have in life.

My own personal life?  I don’t have one anymore.  One of the weird things about cancer that a lot of people with it notice is that when you are diagnosed, you stop being who you were.  I am no longer who I was two years ago … I’m now a cancer patient, and that’s all I’ll ever be.  Maybe that’s like being an alcoholic or drug abuser?  All I know is I don’t see the world the same anymore.  Honestly, if it wasn’t for Ariana I wouldn’t even be here now – most of the reason I started therapy was that I was suicidal when I found out about all of this and things began progressing.  I don’t want to be this, period.  It’s not fun, I don’t enjoy life anymore at all outside of my daughter, I have trouble dealing with the anxiety (to put it mildly), I have trouble with the lack of support I feel from most of those around me, and what little quality time I can muster with my daughter is always tainted with the fact that at some point this is going to destroy her just as much as if daddy took the shotgun down to the basement bathroom.

Try living with that thought for a day.

I have no more real goals.  I can’t dive anymore, safely, even in a swimming pool.  I doubt I ever will again, and after a year and a half living this wretched existence I have trouble even remembering what it’s like.  I can’t teach it, which not only did I love but I took a lot of pride in.  By now I would have been a full-blown scuba instructor, and would have been tapped by the shop to actually be a trip leader to exotic destinations.  That’s all gone now.  Hell I don’t even like leaving the house anymore because I don’t want to be that far from a bathroom.  My bucket list of going to Thailand, Indonesia, Egypt, etc?  It’s like it never even existed anymore, like it was some former life.  The thought terrifies me now.

My friends?  What few I had are mostly gone.  The scuba shop folks have all drifted away except for two that I have lunch with maybe once a month.  Amy and I are very good friends with a couple we met on a dive trip that we have dinner with once a month when I don’t have to cancel because of my health.  I see R. for lunch once a month or so, and my buddy L. at Wells Fargo that I met in my assistant instructor class.  That’s about it – most of our friends that we see are Amy’s friends, who have honestly been a hell of a lot more supportive than my own.  Occasionally I get a text or something from someone, but for the most part they’ve all passed me by.  That’s pretty common too with cancer, and although it’s hard not to I don’t hold it against them.  It’s tough to deal with and you definitely find out who your friends are.  L. and that couple friend visited us in Arizona, did you know that?  L. twice actually.  The rest?  A few emails prompted by an email Amy asked the owner of our dive shop to send to all the employees and silence ever since.  My phone rings so little anymore I rarely leave the ringer on.

My life?  I struggle to get up, go to work every day, yawn my way through the afternoon most days and come home after 5.  I try to bury all the energy deficiency problems enough to have fun with my daughter and stay awake through dinner, do her bath and get her ready for bed and read her a book.  I try to talk to my wife most nights, or help with the dishes, but by then I’m usually so tired it’s just easier to go into my home office and kick back in my chair.  I say goodnight to Amy and then stay up another hour or so, because it’s the only real guilt-free time I get during the day (i.e., my resting is not taking away from time with Amy or Ariana) and then after taking all of my pills go to bed and do it the next day.  I have nothing to look forward to in a real sense anymore – I just “do,” basically for those around me.  The bills have to be paid.  I have a mortgage.  Ariana needs clothes.  Etc.

Last day in the CO.

Sitting at work, frustrated simply due to trying to trade municipal bonds on a Friday.  I should know better, but I can only chalk that up on the list of things that I used to be good at remembering and now, probably due to chemotherapy, I forget.  It’s weird, having a life centered around being cerebral, and then having that fail on a regular basis.

We leave tomorrow, assuming the weather allows us to.  I’ll be taking a very expensive flight Sunday if it doesn’t, I guess.  Not too worried though — roads were fine today, albeit icy, and all we have to do is get about 1/3rd of the way there and it’s smooth sailing.


I haven’t packed yet — not that it will be too difficult a task, since I’m basically only bringing t-shirts, sweats, underwear, socks, 1 pair of shoes, a couple pairs of jeans and perhaps a polo or two.  Some henleys in case I get cold and my lightweight pullover fleece for the same reason.  A few dive-related shirts like my Guide shirts from the Aquarium to remind me of happier times.  I have all of my tax stuff ready to roll, laptop and Kindle are set, battery charger, headphones, toiletries.  If there’s room I’ll stuff my pillow in.  A phone charger, pictures of the wife and kiddo.  I would be worried more about it not being packed already but it’s not like I’m going to Fiji or something.  It’s Arizona, if I forget it I can buy it.

Saw a friend and coworker yesterday and had the longest chat I’ve ever had with her.  As I told her in a thank you email, it’s been enlightening during this whole thing to see who the truly good people are in my life.  People I never would have expected to hear from have stepped up in amazing ways.  I’m not comfortable with that, since I’m not good with being the recipient of that kind of stuff, but it’s humbling and makes me want to pay it forward, karma-wise, all the more.  Perhaps that’s partially to defray the guilt I seem to feel over people worrying about me?  Not sure, but regardless of motive a little more positivity can’t hurt.

I can’t remember if I mentioned my new Iron Maiden shirt in my last post, for which I again am going to blame chemo.  It’s great, now I have something else to blame for that shit besides college bong hits.  Anyways, I went to dim sum with a bunch of friends last weekend and apparently, since this cancer thing first started, two of them hatched a plan to get me a Iron Maiden soccer shirt with “FUCK CANCER” on the back where the name would go.  Maiden’s merchandiser refused, bizarrely, so some coworkers at the scuba shop who own a printing shop did it.  So they hand me this shirt, signed by a ton of people I know, and I didn’t even know how to react.  Just blew me away.

Anyways my favorite Maiden song is “Hallowed Be Thy Name,” which has everything a Maiden fan could want — cool lyrics, harmonized guitars, sweet solos, the signature Maiden guitar “gallop,” etc.  I could probably sink a few hours of solid debate over whether this is cause or effect, but for whatever reason since July I’ve had this song running in my head for obvious reasons.

I’m waiting in my cold cell when the bell begins to chime
Reflecting on my past life and it doesn’t have much time
‘Cause at 5 o’clock they take me to the Gallows Pole
The sands of time for me are running low

When the priest comes to read me the last rites
I take a look through the bars at the last sights
Of a world that has gone very wrong for me

Can it be that there’s some sort of an error
Hard to stop the surmounting terror
Is it really the end not some crazy dream?

Somebody please tell me that I’m dreaming
It’s not easy to stop from screaming
But words escape me when I try to speak

There’s a lot of truth in that song — it’s odd because lately people have asked me how I can be so seemingly calm about everything coming down the pipe.  I’m not, really, but I just don’t have the strength to rail against this anymore. Plus I have no choice, which makes this simple.  I mean I could skip the transplant and treatments and die painfully or try to extend my life as long as possible to be with my family.  That’s it, that’s my choices.  I have the best medical care I can possibly get, the logistics are worked out, the appointments all made.  Not looking forward to any of this outside of my plan to try to bribe a nurse to bring me In n’ Out in the hospital, but what can I do?

But on the inside there’s this little boy, a boy I remember from when the world started to hurt when I was small.  When mom was drinking and being abusive, and my parents fought what seemed like every night while I sat in my room and pretended not to hear.  I feel like a part of me stopped growing then while the rest did, and through trauma throughout my life he’s looking out my eyes, scared, alone, and not sure what to do.  He was there when I got destroyed by my first girlfriend cheating on me, when the reality of my first divorce sank in, when I found out I have cancer, etc.  And he’s terrified of all of this coming up, wondering why this is happening, wanting a hug, wanting something else … anything else, but this inevitability.  I think he’s my hope, dashed, the manifestation of what I wanted the world to be and what it ended up doing to me.

Either way, he keeps singing that song.