Jesus, ouch dude.

In a feat of typical Rich timing I managed to pick up a cold right before my IViG infusion yesterday when my immune system was at its most compromised.  On the plus side the cold seems to be moving pretty fast.  The negative?  every time I cough it feels like someone is stabbing me in the lower back.  Was up almost every hour on the hour last night coughing and then muffling a scream into my pillows.  Really wish I had some idea of what in the Hell is going on with my lower back because I have never felt pain like this before.

Oh and it was a damp evening thanks to the night sweats, which I detest. Pretty sure that’s coming from the Velcade portion of the PACE chemotherapy regimen — I used to get that all the time during year one when I was doing weekly Velcade shots.

So yeah, pretty miserable night, but I made it to work. Stoned off my ass on Oxycodone and DayQuil, but here nonetheless.

I met with my oncologist yesterday as well and, thanks to my numbers continuing to improve on this VTD-PACE regimen, we’re doing round four.  I also signed the paperwork at that meeting for my collected stem cells to be delivered here from Arizona as that is still the plan (a stem cell transplant) following this fourth cycle of PACE. I’m still concerned about the six week break between the end of round four and the start of the stem cell transplant, but sounds like there’s nothing to be done about it — Dr. Matous wants me as recovered as possible before I walk into the transplant.

Here’s to hoping that my numbers don’t go nuts like they did at the start of the year when I had to take a few months off chemo for that stomach surgery.

 

Many worlds I’ve come since I first left home.

Tomorrow I go back into the hospital for a week for the third, and most likely final, round of VTD-PACE. I’m not worried about the hospital stay, although that’s a pain in the ass, but more what comes after.

This weekend, my wife and daughter went up to Breckenridge with my wife’s parents.  I stayed at home, not really in any shape for outside activities or prolonged sun exposure. I spent most of that time thinking about things, which rarely is a puppydog and rainbows activity for me. And missing my daughter.

I dunno, folks.  Although I hadn’t even really recognized it, last week was my four-year anniversary of this nightmare.  I wish I had something to celebrate besides simply surviving, a verb that still seems so alien all these years later.  It seems to be the key word, though, especially this year and with these treatments.  Yeah, I’m still around … but in pretty rough shape.  I find it difficult, in fact impossible right now except in an abstract way, to even see the light as it were.  No matter how I slice it I’m staring down the barrel at several more hospital stays, doctors visits, tests … the list never seems to end. We’re off the rails now and in the “here be monsters” part of the map where the decisions are not written in stone like they used to be, and the choices make the earlier therapies seem like fun by comparison.

Another round of this?  Unlikely, but possible.  Dr. Matous never does four of these and rarely three, but this chemotherapy is all that has really made a dent in the last year so three it is.  A stem cell transplant next?  I’m at a zero level of excitement for that, but if it’s what the doctor wants I’ll certainly pay attention — I didn’t spend all the time and money to get top of the line healthcare to just ignore it.  CAR-T?  After the SCT, but apparently that’s got some serious hospital time as well.

If I think too long about it all I’m overcome with … well, I dunno.  It’s not depression, although there’s certainly some of that mixed into this.  What’s the word for an overwhelming sense of “fuck me running?”  Not sure.  I’ve felt for a while now like things have taken a turn this year, not necessarily in a good direction, and this is more of the same.  I think I’m in that stage a lot of patients seem to get to at some point where the treatments are so intensive both physically and time-wise that I’m rebelling, at least internally, at the toll it’s taking. I’m exhausted all of the time now and I have lower back pain so severe that even a double-dose of Oxycodone combined with some of Colorado’s finest isn’t getting rid of it, making getting up from a chair or couch an adventure in pain.

I have an MRI scheduled for my back tomorrow, and on the bright side, hey, I’ll get the good drugs to deal with the pain.  Generally when you answer the “what’s your pain at” with tears and a minor scream when you get out of the hospital bed they give you the good stuff.  So helloooooooo Fentanyl, it’s been too long.

I can’t seem to get back to a more carefree, happier headspace lately. I blame the steroids first and foremost, but it’s not as bad as it was before — perhaps because I know what to look for now?  I just bite my lip and boggle at the things my brain comes up with (bitter retorts, nasty replies, constant critical comments, etc.) and only let the good stuff come out of my mouth. But I can’t fake happy like I can fake politeness, and my emotional wall seems dangerously porous again. How do you really explain why you suddenly start crying out of nowhere when your thoughts stray to cancer and your child?  When you have to grit your teeth and clutch the armrests of your chair so tight you snap one in half to get your head back out of that particular hole?  How when most people daydream about summery stuff you’re idly pondering your own funeral?  It’s definitely a weird mental space to inhabit.

How do I understand and come to terms with the person I’ve become when the thoughts I have, as horrible as they are, come naturally?  I mentally go through a checklist of what to bring and do for this next week-long stint and without skipping a beat note to write a goodbye letter to my daughter.  A goodbye letter.  To my daughter.

Jesus.

You try it.  Maybe it’s just me but I don’t know how to deal with things like that without opening the floodgates.  Which is a good look on top of the bald head and hairless face, let me tell ‘ya.

But yeah, as my health has been much more precarious this year I’ve realized if I were taken suddenly there’s nothing but scattered writings and pieces — I need to know there’s more, a direct connection.  So I have some writing to do.

That should be fun.

Decided I want the Dead’s “Brokedown Palace” played at my funeral, although not in an obnoxious “OK everyone listen to this song” way. Just on loop until the festivities, as it were, start.  Probably quote this in the aforementioned letter as well.  Something powerful about this song that has always made it stick in my mind:

Fare you well, my honey
Fare you well, my only true one
All the birds that were singing
Are flown, except you alone

Gonna leave this brokedown palace
On my hands and my knees, I will roll, roll, roll
Make myself a bed by the waterside
In my time, in my time, I will roll, roll, roll

In a bed, in a bed
By the waterside I will lay my head
Listen to the river sing sweet songs
To rock my soul

River gonna take me, sing me sweet and sleepy
Sing me sweet and sleepy all the way back home
It’s a far gone lullaby sung many years ago
Mama, Mama, many worlds I’ve come since I first left home

Going home, going home
By the waterside I will rest my bones
Listen to the river sing sweet songs
To rock my soul

Going to plant a weeping willow
On the bank’s green edge it will grow, grow, grow
Singing a lullaby beside the water
Lovers come and go, the river will roll, roll, roll

Fare you well, fare you well
I love you more than words can tell
Listen to the river sing sweet songs
To rock my soul.

Yes I listen to the Dead AND metal that makes even metalheads cringe at its heaviness.  The 4,000+ songs on my phone are an exercise in schizophrenic music habits.

Anyhow I’m just scrapping the barnacles off the soul here and preparing myself for the hospital stay, so sorry for the negative spiral.  Sadly I actually had something I was going to end with here that was positive, but of course chemobrain ate it before I could get fingers to keys.  Sigh.  Well one bright note, the GOP has failed to destroy our broken but somewhat functional healthcare system, so at least my Twitter feed will go back to cancer-related stuff instead of the incessant political Tweets.

Little victories.

See you in the hospital.  I’ll be the one eating a Chicago dog with a mustard stain on my hospital gown.

 

PACE round 2 wrap-up and other precious moments.

Drip.  Drip.  Drip.

People who watch grass grow or paint dry have no idea how much more engaging it is to watch IV fluids.  Sitting at CBCI getting the monthly IViG and trying to find a path home with this blog entry, but there’s a part of me that wants to play the cancerous version of “how many licks does it take to get to the center of a Tootsie Roll Pop” (ancient commercial reference) with my IV.  Although with chemobrain I’d probably blow the count halfway through and then be pissed for a month.

“5,400,001. 5,400–“

Nurse: “Can I get you anything?”

“5,400,0–, err, 5,4 … GOD DAMNIT.”

First the good news. As hard as it’s been on me physically, the two rounds of this “kill it with fire” chemo are getting the job done.  From a peak in early May my M-Spike has gone from 3.9 to 2.8 (and according to an email I just got, 2.3 as of Monday), igG is down to 3,786 from 6,041 and my Kappa is down to 436.8 from 1,178.6. Not bad, although I had greedily hoped for even more drastic results for several reasons; perhaps most of all because if you are going to go through the hassles, the GI issues, the pain, the fatigue, being in the hospital for a week, the mustard stains on your favorite t-shirt from ordering gourmet hotdogs delivered to the hospital (what, that could happen to other people), etc., you want to get your money’s worth. The results were good enough, however, for my doctor to want one more cycle as per our meeting this past Friday.

Sigh.  I go back in on the 19th. If you work at Billy’s Gourmet Hot Dogs then congratulations, I’ll be paying for your next vacation.

At the meeting last Friday I also met Dr. Matous’s transplant coordinator, Dana, who gave me THE BINDER. Having gotten one from the Mayo Clinic when I did my first stem cell transplant and now one from CBCI I’m assuming this is standard practice, but for the uninitiated THE BINDER is a collection of information on what to expect, rules, diet, scheduling, yada yada yada.  I read through it this weekend and was amused to see that there was a special callout about marijuana in the rules — specifically, ixnay on the opeday during the hospitalization and afterwards, including edibles (that part makes no sense to me, but OK). Although they did separate out marijuana from the “recreational drugs” category, so that’s progress. I’ve been an activist for medical marijuana for several years now so seeing stuff like that makes me believe that attitudes are indeed changing at the higher levels, especially in healthcare.

You also can’t have nail clippers or a razor. You can however have people bring you restaurant food which seems odd since at the Mayo they were pretty adamant about not eating food that hadn’t just been cooked and served to you, but hey, if I can get delivery while in the hospital for three weeks then it will make things a lot more pleasant.  I’ve noticed that, much like staying in Vegas, no matter how good the food is (and PSL’s is pretty good) you still feel like you’re living in a Denny’s after a week or so.

Speaking of razors, when I entered the hospital for round two of this chemo I started losing my hair in earnest thanks to the first cycle. Irritatingly I only started losing it in the middle of my head, making me look like a poster child for those spraypaint your head infomercials for baldness, so with nothing better to do I busted out my shaving razor and shaved my head during my inpatient stay. As an encore all of the dark hairs fell out of the goatee section of my beard and mustache, so I shaved that all off too. Unfortunately I think in doing so it opened somewhat of a Pandora’s Box without me even knowing it that has fueled some of the depression I’ve been feeling lately. I think it’s a pretty common tale in the cancer world, but since only one previous treatment threatened hair loss (my first stem cell transplant in 2014) and it didn’t really happen I never gave it much thought.

Now I find myself staring into mirrors or purposely ignoring them; I feel like I look like Uncle Fester from the Adams Family. It reminds me a bit of year one when I was first coming to grips with this fucking nightmare while doing chemo during the day (Velcade shots) and feeling an intense isolation as I walked out of my office building when everyone else was going to lunch. Perhaps it’s silly but I find myself battling self-conscious thoughts, something I thought I had been done with by forty-six. I have to consciously look past the feelings of embarrassment now even though I know it’s ridiculous. Might as well get used to it, though, as with another round of this followed by a stem cell transplant I won’t have a beard again until around Christmas-time.  Grrr.

I imagine that seems a petty concern when you are facing a terminal disease. Honestly I never thought it would be a big deal to me, especially since I’ve had my head shav– err, shaved?  Shorn? Whatever, I’ve been getting the brain basket done with a #1 razor for a year or more and had a full beard since my goatee started growing back after the first stem cell transplant. It’s different than I thought it would be though, adding a visceral in-your-face reminder of this disease that I can’t avoid around reflective surfaces.  Didn’t see that coming.

I did, however, talk to my oncology team’s nurse practitioner about depression today. I’m reasonably sure, when I examine things from a distance, that I am in fact depressed. Duh, obviously, but I mean on a level where I would like to go after relief medically so I can function. After consulting with a few psychologists on staff, the oncologists want me to taper off of Lexapro, which I started when I was first diagnosed (suicidal thoughts, general depression) and start taking Effexor. Hoping this works since I was at the max dose of Lexapro and lately I’ve been feeling like it may not be working very well. Fingers crossed because I really do not need a healthy side dish of depression along with my heaping pile o’ cancer.  Especially heading into a gauntlet of some fairly hardcore regimens this year.

One way or another, one way or another,
One way or another, this darkness got to give.

Been listening to the Dead a lot recently (that snippet is from New Speedway Boogie, an old favorite of mine), partially because I’ve been watching this great documentary mini-series on Amazon about them and really it’s just been a while since they lead the mental rotation of what I feel like listening to.  I get in a Dead mood about three times a year and then binge on the live stuff for a week, which you can now download a fuckton of from iTunes. Which still seems weird and out of place to me, just like it does when I download old punk music, but we do live in a convenience-centric world now.

But I digress as usual.  Today at CBCI I also asked if I could get a “why” as to why we’re doing a stem cell transplant, especially when the first one didn’t really do much and subsequent ones are, as I was told when I was at Mayo, only 75% as effective as the first one. Not that I don’t trust my oncology team, but I’ve now been asked this twice by folks and neither time have I really had a satisfactory answer. If I’m going to deal with the incredible hassle, danger and three long weeks without seeing my little one I need to know for myself why I’m doing it beyond just a vague “to reduce my numbers.” Should have an answer next week as they are going to discuss this question at their Thursday meeting.

Thinking about transplants reminds me of a good stem cell transplant story, however.  Back in 2014 when I did my first one I moved my family to Scottsdale for several months and set up my laptop to Skype with my daughter every night (who was three at the time).  So the first night I get on Skype all excited to see Ariana who, after maybe one minute of talking to me, turns off camera to her mother and asks “How do I change the channel?”

Edit: Almost forgot. Found out an old friend was struck down with a brain aneurysm this past weekend and is fighting for his life. I’m not the praying type but if you can spare a few seconds to send some positive vibes for Rob S. and his family I’d sure appreciate it — his kids don’t deserve to grow up fatherless and I have no doubt he has a ton left to offer the world. Thanks.

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.

Deja vu — ouch!

You know when you are at your desk Monday morning chasing Percocets with a soy latte that it was either a really good, or really bad, weekend.

Friday my white blood cell and other counts were bad enough that Dr. Matous and his nurse practitioner agreed that if we’re starting a new Revlimid cycle there’s going to be a problem at my numbers and the current dosage.  As a result they decided to change my Revlimid to 15mg every other day (from 15mg daily) and got me approval for a shot of Amgen’s Neulasta, a $7,000 drug that stimulates the body into making more white blood cells.  The last time I had this, or something similar, was when they were harvesting my stem cells for transplant 3 years ago, although I think then I had Neupogen.  As I recall, the primary difference as I understand it is Neulasta lastas longer.

When a typo becomes a bad joke on the next Geraldo.

Minor problem arises … the insurance companies apparently won’t approve a Neulasta shot within 24 hours of chemotherapy.  Solution?  Either drive back to CBCI on Saturday or wear an injector that, 27 hours later, will automatically give me the shot.  Not wanting to drive all the way downtown AGAIN I opted for the injector being stuck to the back of my arm.  They look, and are about the size of, a container of dental floss:

onpro-device

When they put the injector on you it pokes through the skin and then starts blinking green.  27ish hours later it beeps and then injects you.  Pretty wild stuff.  Kind of nerve-wracking too, though … I mean it’s $7,000 of medicine just taped to you on the hope it works right.  What do you do if it screws up, call the insurance company on Monday for another one?  Felt kind of anxious walking around with it, as well as anxious that it’d start and I’d watch $7,000 of Neulasta run down my arm instead of into it because I had bumped it once or twice.

In the midst of all of this going on, however, I forgot how painful this drug can be.

It’s hard to describe what these drugs can make you feel like.  I had severe bone pain in my back, especially lower back, hips and legs, as well as a shooting pain in my skull.  I’m assuming this is somewhat similar to what the bone pain of Myeloma is like when it gets to that point?  Either way it SUUUUUUUUUUCKS.  I don’t even have a comparison I can make to help you understand this, but it’s easily the worst pain I’ve ever had in those locations.  When I had the Neupogen during my stem cell harvest I was just laying there and for all I know they even gave me painkillers.  Walking around in your normal life though?  Yeesh.

They tell you that for whatever reason Claritin helps with that pain, but if it did I didn’t notice.   I slept about 11 hours Saturday night and then the pain started.  By Sunday night I was in rough shape and started raiding the household stash o’ Percocets (which worked really well, btw).

So here we are, low on sleep and high on opioids.

Which incidentally is a great country music song title.

Nothing really pithy to get into today.  Days of pain generally force a recognition of my  situation that, as I’ve talked about before here, I mentally deal with normally by  distracting myself.  I was so goddamn tired all weekend, however, that I didn’t even have the strength to do that.  My wife, however, was blown away by how helpful I was to her on Saturday, so that’s a good thing — she had a gall stone attack Friday night and was in the ER from about 1 am to 12 pm Saturday and in bad shape pain-wise.  My continuing efforts to make up for the last several years of DexRich are in fact working (at least until the next major fail), which makes me happy, and having had my gall bladder already removed for exactly what happened to her this weekend I was able to offer some solid advice and doctor referrals.

Ahh, that was one thing I wanted to get into today.  So Fridayish I did something I rarely do, which is interact on Twitter with some of the more well-known names in Myeloma. I appreciate that it’s useful but I seriously hate Twitter.  As a writer, even a hack, it’s depressing how much Twitter just eats the beauty of language and the art of phrasing things and turns adults into people who substitute “u” for “you” like a 16-year-old texting someone just to make a character limit.  Regardless, I was, respectfully, calling out someone over some information on Dex on a slide from some Myeloma-y conference.  In seeing the slide I realized that it was just the usual boilerplate stuff I see and once again showed no real understanding of what patients go through, at least to me.  Having had my life and who I actually am pretty much rewritten by Dex it’s a sore subject with me.

Again, zero disrespect intended towards anyone involved but look at the pic link in the tweet I’m replying to and read the columns on that Powerpoint slide.  Now read this, a quote from drugs.com (my 5 seconds of Google research):

The most commonly occurring side effects have included alteration in glucose tolerance, behavioral and mood changes, increased appetite, and weight gain; the incidence generally correlates with dosage, timing of administration, and duration of treatment … A wide range of psychiatric reactions including affective disorders (e.g., irritable, euphoric, depressed, labile mood, and suicidal ideation) psychotic reactions (e.g., mania, delusions, hallucinations, aggravation of schizophrenia), behavioral disturbances, irritability, anxiety, sleep disturbances and cognitive dysfunction (e.g., confusion, amnesia) have been reported. These reactions have been reported in adults and children. In adults, the occurrence of severe reactions has been estimated to be about 5% to 6%.[Ref]

Frequency not reported: Depression, affective disorders, anxiety, emotional instability, euphoria, insomnia, mood swings, personality changes, psychic disorders, confusional states, anxiety, abnormal behavior, irritability, aggravated schizophrenia …

So to preface what I’m about to say, I know NOTHING compared to whoever @IMFnurseMyeloma is.  She’s a Mayo Clinic nurse who deals with MM all the time, I’m just a member of the MM doomed tribe.  That being said, the “Managing Steroid Side Effects” of her slide is side-effect management for the stuff to solve side effects from pretty much every drug I’ve ever taken — take with food, take some stomach stuff if you have “discomfort.”

I’d also note that in the drugs.com article they list a lot of what I went through, and others I’ve talked to, as only happening in 5% of patients.  Since they’ve happened in 100% of the people I’ve talked to I’d argue that statistic.

What I won’t argue is a simple bullet point addition to that list — TALK TO SOMEONE ABOUT THESE SIDE EFFECTS THE MINUTE YOU ARE PRESCRIBED THIS DRUG.  You may never experience the emotional and psychiatric side-effects but I, and others, have been broken by them.  Be informed, OK?  Suicidal thoughts, total lack of sleep, personality changes, irritability, emotional instability, even weight gain and the psychiatric damage that can cause — those are serious things, folks.  Those are what I call “suck-starting the shotgun in the basement” side effects. That’s real, and I’ve experienced it and not even realized at the time that some of these bizarre thoughts and reactions were being caused by one of the drugs I was taking and not my situation (which is hard to separate).  And since a lot of times you don’t see the onset of these (i.e., gradual changes), you may not even realize it.

For those without this experience, try to imagine you are diagnosed with cancer.  While survival rates, thankfully, seem to be up across the board for most types of cancer, that’s still probably the most serious, and depressing, news you’ll ever get.  In a 2012 study I found online, the risk of suicide spikes in the weeks immediately following a cancer diagnosis by 13 times in the first week and 5 times twelve weeks later.  It’s still three times as likely a year later.  Also thanks to the deplorable state of insurance and healthcare combined with drug pricing issues, add all of the financial issues that cancer victims have to deal with.  Then to ice this cake, add a drug to it that’s going to make you retain water so your weight goes up (another giant source of depression and one that can become a brutal circle).  You are experiencing the entire spectrum of negative thinking due to your diagnosis and how serious life just became, and now you’re thrown onto the rollercoaster of Dex.

And that’s not a focus, much less even a discussion point on the bullet list?

Err, eeek.

I can say for myself that the entire reason I began therapy was due to having suicidal thoughts over my diagnosis.  Which a lot of us do, honestly — who wants to live in pain / fear for their life?  I spent a decent amount of time pondering whether, since children have a tendency to “reset” their memories around age five, if it would be better to step out of the picture and let my life insurance take over as daddy.  Ultimately she’s the reason I didn’t pursue this line of reasoning and instead sought out professional help.

My point is simply that a little talking to your provider about how to spot and deal with the mental component is important — a lot more than “take with food,” which while I’m certainly not a doctor I can say with a lot of confidence will not save your marriage when you have become such a bitter, irritable jackass that it and every other relationship you are having is falling apart.  Again, no disrespect to whoever created this slide, it just reads like everything else I see in cancer, which is medical personnel downplaying the serious aspects of what we’re dealing with.

 

Also, given that half of my Twitter feed is articles about the importance of patient-provider communication and patients’ input on treatment, I wonder sometimes if it’s stuff like this that helps cause that divide.  Why isn’t talking with a mental health professional part of the initial diagnosis process?  Maybe it is in places, but personally I think it should be across the board — the absence makes you feel like that part is ignored or not a “real” problem … but I’m here to tell you it’s as real as it gets.

And to cop lines from the UFC advertising, apparently.

Also if you are a provider, think about the impact having someone ready to talk to on diagnosis would have.  Here’s a patient about to get the worst news of their life (or close to it), and, “um, see ya’ and best of luck with that!  We’ll start up poisoning you on Thursday.”  Now imagine how much more comforting if someone was there as part of an active team (not just if you find out they exist) ready to explain how the diagnosis, and some of the medications, may affect you and what to look out for and to check in at set intervals or as needed.

To me that’s just a smart choice that costs nothing.  How many times has an on-staff social worker / therapist / etc. been sitting in their office doing nothing while 2 doors away someone got the “you have cancer” spiel?

Seeking mental and emotional healthcare, especially prophylactically, is not a sign of weakness, emasculating, something to be embarrassed by, etc.  It’s not an admission of being crazy or even that you have a problem — it’s just smart planning.  Please don’t ignore this aspect of treatment.  Every oncology office I’ve been to has some sort of help along these lines, usually free (your mileage may vary of course), specifically to deal with this stuff, although they don’t always let you know about it.

Use it.

Anywho, enough of me playing Surgeon General today.  Not even sure who ours is right now, come to think of it.

With Trump in office it’s probably Doc McStuffins.

Dara, latest concerns and general life updates.

I’m about to embark upon week three of the Dara treatments.  So far so good — I almost feel guilty saying that because I know some chemotherapies are truly toxic to patients, but this new cocktail hasn’t been terrible.

And yes I know Dara is not “technically” a chemotherapy.  I hate semantic games.  Besides taking Revlimid with it kind of makes it a chemo in my book.  As does getting it at a cancer clinic.  When I have cancer.  So if you are about to correct me in that really Dara is  immunotherapy and blah blah and then you get this sudden prescient feeling that I want to punch you in the nose, well, go with that warning.

So far only three side effects have really gotten on top of me, although this early in and with most of my previous treatments having cumulative effects who knows how long that will last.

One is just the fatigue — I blame Rev for that but for all I know it’s this Kraken of a disease letting its presence be known (hard to differentiate, but Rev and Pomalyst made me borderline narcoleptic).  Also the leg discomfort, although I think we figured that one out this week.  I had the monthly IViG infusion this past Monday and in talking to nurse Amy that day about it we decided to try just doing half the Benadryl dose to start (25 versus 50) to see if it worked and … it worked!  No more annoying leg tingling.  Going to ask Friday for the Dara IV if we can try the same thing.

The last side effect is my voice.  When I was doing weekly 40 mg of Dex I would lose my voice a day or so later for a few days.  Now with whatever the steroid is they are giving me with the Dara (not Dex) I lose it for a full week.  Kind of annoying but I’ll take that over being rewired into a psychopath.  My personal life continues to improve (knock on wood) since getting Dex out of my life so I’ll take that trade any day of the week.

BTW I’m still taking 2 4 mg Dex’s a week … one the day after treatment, then one two days after.  On infusion day however I get something else, the name of which of course escapes me.  I’ll try to remember to snag it and the doses tomorrow.

Last week I had severe back pain on Wednesday but it hasn’t repeated itself, so marking that one off the list of side effects for now.  GI’s doing really well, although I have really had little to no appetite since the January colon resection.  It occurs to me to question at this point whether I overate due to depression caused by the Dex/whatever else, if this is a function of my stomach bacteria being all messed up between the chemos and surgery, or something else.  Not complaining yet, however, as all of my clothes fit better.

On to deeper thoughts.  While we have no idea yet (too early, according to Dr. Matous) if the Dara is working, my brain finally put together the variables that led up to this decision and the conclusion is somewhat nerve-wracking.  The original plan was to wait to try to get into a clinical trial doing basically the exact same regimen we’re doing now.  Instead “we” just decided to move ahead several weeks ago.  Being an analyst by profession it’s odd that I didn’t run that decision through my usual gauntlet of why’s and wherefore’s , but something clicked on its own last week — I’m pretty sure the decision not to wait was made because my #’s jumped so high during that chemotherapy break.  I finally saw my M-Spike at my meeting last week with Dr. M. before the second Dara treatment and, um, “wow.”  Highest it’s ever been “wow.”  Like 6+.

The jump my pre-cancer mind would have immediately made that took me two weeks is the implications of that.  If this treatment doesn’t work, which we won’t even know about for another few weeks I think, I’m kind of fucked.  Well more fucked.  Fucked-er?

I like F-bombs by the way.  Sorry if that offends anyone or seems uncouth.  Fearing useful words seems silly to me but to each their own.  At least that’s the pseudo-intellectual response prepared for when my daughter inevitably releases a torrent of them at school someday and I have to explain how that’s pretty much my fault.

Digression reined back in … so that’s my interpretation, anyhow (“fucked-er”), but follow me here.  When my M-Spike was lowish (lowest I ever got was about 1.4, I believe), everyone seemed happy just treating this — well if not casually, then with the lack of ZOMG WE HAVE TO TREAT THIS NOW STAT BZZZ BZZZ HEWP HEWP that you always assume is the case with cancers (and sometimes is).  I was told again and again how it’s better to have a gradual trending down, although my understanding is that at least until recently about half the Myeloma experts wanted the lowest MRD (“minimum residual disease”) as possible and half were good with the gradual thing.  We had options, as well — if something didn’t work, like Ninlaro or the BiRD thing (mixing Rev/Dex with an antibiotic), no biggie.

However, now things are a bit more dangerous.  The bad #’s are super high, and presumably are going to go higher or stay at this heightened level if the Dara does nothing.  While there are certainly more options to switch to, that does tend to trim the choice and immediacy of treatment options a bit, logically.  Been pondering that a lot lately.  Our wiggle-room, as it were, has been significantly trimmed in that a failure at this point may take us to a place that we can’t come back from so easily (organ damage, etc.).  Up until now that has been more of a nebulous concern than a real one, but reality has a way of sharpening the picture on you at times.

Thankfully I’m in a good head space — I really do believe that Dex was the primary cause of most of my mental/emotional ills for the past several years, or at least the catalyst for quite a few.  So I take things in stride, I’m extra nice to folks and double-check everything I’m saying/doing before opening my trap.  I need to get back on the Androgel ASAP as well — kind of took myself off that, which was not a great idea but it is what it is.  I get into this self-sabotaging place sometimes where I know things are a bad decision and do them anyways, seemingly in spite of myself.  Never figured that one out.  I also need to get back on the calcium / vitamin D regimen as well — that one I do know why I stopped though, I was eating horse pills and got sick of it.  Have to remember to research that this week and find a better solution than giant chalky white pills I’m mentally balking at swallowing.

Back to the TRT (“testosterone replacement therapy,” sorry for the jargon), I was listening to a podcast this morning with a retired MMA fighter talking about how folks that were forced to stop using it when TRT was suddenly banned in the UFC (thanks Vitor Belfort!) after being allowed caused a lot of depression in those fighters who just stopped using it.  In case I forgot to mention it somewhere along the line my testosterone dropped way below where it was supposed to be so I started doing the Androgel thing but was terrible about keeping up with it.  Chemo may have done that or I had low testosterone before, no way of knowing now.  Either way I need to be more disciplined about this stuff.  I’m always on it with the chemo drugs, but the ancillary stuff not so much.

Still waiting for someone to do something about the sleep test I did … this is somewhat unprofessional at this point.  Need to remember to ask about that tomorrow at my infusion as well.

I know this is long but it’s been a week and I’ve done a lot of thinking lately, so excuse me a few more minor rambles if you will.

I hope I am not broaching a confidence here, but I received a message about a friend with cancer last week and it’s been on my mind a lot lately.  I’m going to repost it here, albeit with names removed, because it scared me more than a little.  It’s easy, at least after four years of this Myeloma existence, to forget that other types of cancers are not as treatable as mine can be:

Hi everyone. I wish I had good news to give you all, but unfortunately that’s not the case. The cancer is spreading all over and pretty fast. Each week I have new pain. I’ve tried everything that traditional western medicine has to offer, and there aren’t any options left.

I did receive a dose of Avastin, but one of its side effects is preventing me from getting it again. It weakens the intestinal walls and I have a tumor that is growing through my intestine.

So, I am planning to go to Germany for an immunotherapy treatment that isn’t available in the US. It’s costing me a huge portion of my life savings to do this, but I figure there isn’t really a better way to spend my money. I remember my mother once saying, “you can’t spend it when you’re dead!” [REDACTED] is coming with me and we leave in a week. We will be there for one week to start the 1st third of the treatment and then I will finish the last two thirds at home.

I’m very nervous about the precarious situation with my intestine, and I have so much cancer in me that this vaccine has to pretty much perform a miracle. I think it’s time to pray for a miracle everyone! I will update you all when I get back.

Sigh.  I know I’m being opaque here but I really don’t want to overstep a friendship by outing a friend, so please keep them in your thoughts.  And if you do read this I love you, kiddo, and I’ll have you in my thoughts.

On the bright side I was just this week corresponding with an old friend with prostate cancer who at least sounds like they are doing well (checkups every six months, if I remember right, so they’re either not too concerned or their insurance sucks).  Was more relieved than I thought I’d be at that news — I don’t see a lot of positive cancer news around me, so that was a pleasant surprise.  I hope people know that even if I’m not in touch as often as I used to be that they are always in my thoughts.  It’s a weird thing, this cancer life — so easy to disconnect accidentally.

On a slightly related divergent stream it’s strange as humans to contemplate the end of our existence.  I’ve been buried in Mass Effect: Andromeda since Sunday (thank God for gaming laptops when you have all-day infusion appointments) and one part of the story is the main protagonists mother dying from cancer and a memory of the parents discussing it.  Having lived 46+ years as the usual poster-child for ironic outcomes it concerns me that now that things are going well emotionally and mentally it’d be typical that I die from this now-ish.  Not that I’m looking for that outcome, mind you, I’ve just learned to read the tea leaves of my life a bit over the years.  Hopefully that’s just a thought and not a thing and we’ll leave it at that.

What else … oh.  Trader Joe’s is the greatest source of infusion-day snacks ever.  EVER.  Seriously, I got these amazing apple breakfast bars there and the cutest mini-bries ever.  Like a bite-sized full brie.  They’re adorbs, as a friend might say (and congratulations to you, NURSE Kate!).  LOOK YE AT THIS MINI BRIE AND DESPAIR.  OR JUST BE REALLY HUNGRY:

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Cutest.  Brie.  Ever.

I’ve probably mentioned it before but I have a hard time justifying the horrible snacks they have at infusion centers (full of chemical crap) with the fact that eating that stuff has probably given at least a few of these people the cancer they are there being treated for.  At this rate however I’m going to be the weirdo there in my infusion sofa chair working with a charcuterie and cheese plate.  I’ve started bringing Izze’s for the fridge too.  The nurses put an extra sticker from my blood tests or something on them so they look like prescription Izze.

Small things make me laugh.

Alright, brain dump complete.  More news as news becomes news.  BTW I’ve been linking some interesting, and more importantly understandable to mere mortals, articles on twitter.  Take a look sometime — I follow about 50 or so Myeloma experts and news sources and cut out the people that just retweet everyone else’s stuff, then pick the things I find interesting, so hope you do too.  Toodles!

 

First Dara treatment.

Sorry I didn’t post this in the last few days … Friday was a long day for me and this weekend was spent trying to sleep and spend time with the wife and daughter.

So last Thursday I went in for labs and height/weight tests to help the oncology team come up with the right dosage.  Then Friday I had to be at CBCI at 6:30 am (had to get up at 5:30 to make that with time for coffee) and ended up leaving at about 6:45 pm.  Normally it shouldn’t take nearly that long but as I’ll explain they have to do a bunch of pre-dosing of antihistamines, corticosteroids and antipyretics (aspirin, etc.), and I *think* they give you more on Day 1 as well.

Before the fun began Friday I met quickly with Dr. Matous, still in biking regalia, who went through the treatment with me and then noted that in August they may be doing some CAR-T stuff at CBCI.  That would be timed pretty well for me, although as a portfolio manager I’ve put my clients in enough biotech and CAR-T companies that I know how dangerous early-stage trials of that can be (reference Juno Therapeutics CAR-T troubles).  He also mentioned that, especially given how high my Myeloma numbers have gone during this chemotherapy holiday, that our new goal is more getting rid of the disease than keeping it at that manageable state (where we were happier with slower decreases in the primary metrics and much lower MM #’s).

All of which (those primary metrics) I left sitting on my desk this morning, and HealthOne’s patient portal is terribad.  I’ll post them up this week, but I think my IgG is higher now than when I first got diagnosed — the M-Spike wasn’t back from the lab folks yet on Friday so not sure where that is yet.

So anyways, I got pre-dosed with some basic stuff as mentioned before, and they had more ready — specifically Oxygen, since apparently Dara can mess with your respiratory system and with all the pneumonia and 46 years of abuse, wear and tear mine isn’t exactly 100%.  My nurse for the day was the awesomesauce  Melissa — going to try to highlight a few of those folks here since they’re putting in the work.

Things went fine in the first hour, although I was exhausted — had trouble sleeping the night before and on top of that they loaded me up with Benadryl which knocks me out on my ass.  When they began increasing the flow rate of the IV, however, I started getting the chills and severe neuropathy (pins and needles) in my hands, as well as that irritating calf pseudo-neuropathy I got with my last IViG treatment.  At that point they stopped the Dara, gave me more anti-side-effect treatments after getting approval, and then started it up again. I think it took about an hour for the side effects to subside, but my memory is a bit hazy from Friday.

I know at some point I had mental track of everything they had given me but unfortunately I forgot it all.  Thankfully HealthOne has a handy patient portal that has all of this stuff an asstastic excuse for a patient portal that had no information from Friday.  Sorry!

That’s basically it — I tried to sleep for a bit with some luck until just after lunch, albeit with being woken up every 30 minutes so Melissa could take my vitals.  I spent the rest of the day playing on the laptop and cranking metal (headphones, obviously) while just sitting in this little infusion room, munching on a couple of Trader Joe’s apple breakfast bars that I brought (delish) and chatting with Melissa.  Zero luck bribing any of the nursing staff to get me a Starbucks down the block, mostly I think because they had purchased a super-sub to commemorate a nurse’s last day that day and nobody went out to lunch.  No biggie.

Spent the weekend not feeling too bad although all the IV steroids messed with my sleep schedule quite a bit and I had some minor nausea.  Thankfully our weekend schedule allows for things like sleeping in since Amy and Ari go to Lifetime Fitness each morning for a few hours.  Took a nap or two but just tried to focus on not being a steroid-Nazi (success!) and just relaxing.

I think my next treatment is this Friday … Dara is given, at least in my case, once a week for eight weeks IV and then every other week for eight weeks IV.  Mix in the IViG every month and I’ll be seeing a lot of the CBCI folks, but that’s all good.  Need to remember to bring Melissa something, although a box of cupcakes for someone who had a hummus sandwich for lunch seems like a poor idea.  I’ll come up with something.