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.

The bad sevens.

Not even sure where to begin this.

I guess just the facts to start.  Tuesday night I started feeling a bit run down with a tiny productive cough and some minor nasal congestion.  Given all the craziness of the last two weeks (IViG, blood transfusions, bone marrow biopsy, the usual weekly chemo, the Neulasta shot, etc.), I was inclined to think it was just the aftershocks of all of that.  Wednesday I woke up and felt like Hell … low energy, body aches, the nasal/chest congestion.  Went to work but came home at lunch on my last personal drop of energy and slept until about 10 pm.  By then I had developed the sweats, chills and a 102.3 temperature.

Waiting until morning we contacted CBCI and they gave me an appointment, but after waiting an extra 30 minutes in their office past my appointment time we realized they were so slammed that I might as well just go to the ER downstairs.  The ER did the usual stuff (chest x-rays, cultures, blood tests) and decided I had pneumonia again, so the wife and kiddo went home to get Ari to pre-school while I waited for the inevitable admission to the hospital.  They brought me up to the oncology ward and I’ve been here ever since, fighting what they now tell me is the flu.  Let’s see … sweats, chills, full body pain, cough, nasal congestion, zero energy (due to damn near zero hemoglobin again), nausea and the kitchen sink.  Thankfully the wonderful nurses here have been a big help even slammed (I got the last bed in this ward, which for whatever reason I always feel guilty about), and the Dilaudid and now Oxycodone (Dilaudid works great but gives me a headache at the end of every dose) have gotten rid of the pain.

They’ve done nothing for my mental state.

Even though I was forced to skip chemo this week my counts are still really low, so I’ve had 3 transfusions in as many days.  More disconcerting, however, is I met with my oncologist today at the hospital to discuss my treatment and bone marrow biopsy results from Monday.  Since the beginning of March and this Daratumumab / Revlimid / steroid therapy my M-spike has gone from 4.4 to 3.5 in just over a month.  That’s great, right?  Problem is my kappa is going the opposite direction and I get the feeling that the doctors are a bit confused by that (apparently they usually march in the same direction).  Not sure where my IgG is but I’ll try to find it.  Anyways here’s the scary part — my plasma is 90%, according to the bone marrow biopsy.  As I understand it what that means is in the sample they took from my pelvis on Monday placed on a slide, 90% of the white blood cells are monoclonal (bad) plasma cells.

My oncologist didn’t say it, but I’ve done enough reading to know that that’s probably why my counts are so bad — the good blood cells are being crowded out by the bad ones.  He wants a few more data points so we’re going to continue this for a few more weeks but chances are he is going to change strategies soon.

I’ll be honest, I’m kind of heartbroken by all of this.  I’m just so tired of it all.  I’ve been slogging through this fucking mess for what, 4 years now?  And there hasn’t been a break.  Chemo after chemo after stem cell transplant after chemo after chemo ad nauseum.  Barely a partial remission, and when I took a two month chemo holiday this year for my surgery my numbers almost doubled.  I feel like this burden just gets heavier, and heavier, and heavier.

So here we are, realistically at what could be near the end of the journey I’m guessing?  I have 90% bad cells and my counts are low, so where do I go from there?  Now I have no idea.  And you know what?  If this is it, I’ll be honest — part of me doesn’t even care.  I read about these folks who have done 20 years with Myeloma and I don’t know that I have that strength even if I’m given the time.  I just need 13 more years to get Ariana out of high school and I feel like that’s being taken away now as well.

I can’t even mentally go there right now, I’ll be out the goddamn window.

Just once, I would have liked to had a blood test that showed whatever we were doing was working amazingly well.  But man, not one in four years now.  I can’t describe how brutal that is, week in and week out, to try to summon just a tiny drop of hope and watch it get squashed every time.  I’m tired of doctors and nurses and hospitals — I like the folks but seriously.  I can barely even work now I’m down here so much.  Sick of being afraid to kiss my daughter, and having to wash my hands like I have OCD.  The dumb thing is the IViG at least has been working — I haven’t really been sick since I started it except for this stupid flu (which I’m not sure IViG could deal with anyways).

I’d like to think I took a lot of this in stride.  I had to give up diving and my path to become a diving instructor, a real passion of mine, and even though I knew it was fucking dumb I kept up hopes that someday I could safely do that stuff again with my immune system.  I go to most of my appointments alone because even though I appreciate the support I don’t want to put this cloud over other people.  Plus I’ve found having folks there at times can make the emotional wall crack, especially if it’s my daughter.  I didn’t really even want much from life anymore — time with the people I care about, their health, and some quiet time to ponder things.

I give up, this entry is going nowhere.  Sorry.  I guess this is where I’m supposed to get religious as a cancer victim now, right?  Yeah.  Problem is the only God in my world is Random Number Jesus and he just keeps rolling the bad 7’s for me, one after the other.

Oh.  Have a positive attitude Rich!  Keep your chin up!

Yeah I’ll get right on that.

My hips are a code violation.

Eventful week, and not really in a good way.

So Friday I went in for the weekly Dara appointment, but there were problems with my CBC (“complete blood count”) results.  Namely that my red blood cell count was in the danger zone.

giphy

Sorry, Archer joke.  Here’s what the danger zone looks like, apparently, with my number and then the “OK” range in parenthesis and a description of what each one is (that I shamelessly copied/pasted from webmd.com):

  • Hematocrit 18.8% (40-54%).  This test measures the amount of space (volume) red blood cells take up in the blood.  The value is given as a percentage of red blood cells in a volume of blood.
  • Red Blood Cell 2.14 10 12/l (4.4-6.0 10 12/l).  RBC’s carry oxygen from the lungs to the rest of the body, and carry carbon dioxide back to the lungs.  If the count is low (anemia), the body may not be getting the oxygen it needs.
  • Hemoglobin 6 g/dl (14.2-18 g/dl).  the hemoglobin molecule fills up the red blood cells.  It carries oxygen and gives the blood cell its red color.  The hemoglobin test measures the amount of hemoglobin in blood and is a good measure of the blood’s ability to carry oxygen throughout the body.
  • Platelet Count 78 10 9/l (150-400 10 9l).  Platelets are the smallest type of blood cell.  They are important in blood clotting.  When bleeding occurs, the platelets swell, clump together, and form a sticky plug that helps stop the bleeding.  If there are too few platelets, uncontrolled bleeding may be a problem.

Anyhow, the doctors decided to keep the Dara appointment but prescribed two bags of blood.  Thankfully I ran my errands the day before, since that added four hours to my day.  Easter weekend itself wasn’t horrible although I was exhausted all weekend even with good sleep.  Saturday my daughter Ariana had belt testing at her TKD gym and did great, then Amy’s parents came up to celebrate Easter since my mother-in-law had to fly out Easter Sunday.  They set up an egg hunt outside which she loved.  Sunday we met my parents in Cherry Creek briefly after lunch at one of our favorite seafood restaurants, Blue Island Oyster Bar.

So Monday comes around and it’s IViG time.  The CBC from Monday looked about the same as Friday’s, just minor improvements.  Due to my numbers last week my doctors asked for a bone marrow biopsy, my fourth now, to give the doctors a better picture of what’s going on with my disease.  Not wanting to inconvenience anyone I opted for no anesthesia and just did it with a local — really didn’t hurt much at all and was vastly quicker than doing it with the fun drugs in the hospital.

Do those holes grow back, by the way?  I need to ask my doctors that.  Feel like my hips must look like Swiss cheese now.  Seeing as how my hips are, as far as I know, load-bearing, I’m pretty sure I’m not up to code anymore.

Had trouble sleeping last night, although I was in a great mood last night.  Oddly I think the non-Dex steroids might be IMPROVING my mood.  Lord knows I had enough between Friday and Monday, Jesus.  Even a good mood couldn’t keep the pain away though — spent most of the night uncomfortably sitting at my home office desk and fighting off what seems like a minor cold and a minor temperature (99, at 101 I’m supposed to call the doctor).  Came to work today since I missed Monday and will miss Thursday (Dara day this week) but popped an Oxy when I sat down and I’m just trying to relax and not move my hips.

Sorry for the inelegance of the first part of this entry — just sort of core dumping the last 4 days and I can’t think 100% clearly today thanks to the body aches and pains.  I wanted to jot some notes down about just that, however.  I’m wondering, as I’m sure a lot of the doomed do, if it’s possible to separate out what is causing what pain-wise.  While driving to work this morning I was thinking about this — whether the bone pain I am feeling is the Myeloma and not just side effects from something else.  Hard to know — I’ll ask the doctor but I’m guessing that there’s no way of knowing.

I’ll be honest, I’m a lil’ freaked out.  Just a little, mind you, but there’s something truly un-nerving about watching parts of your body and its systems fail.  The irony that what’s beating me up so bad (presuming this is chemo drug-related) is actually working so far hasn’t escaped me either.  It would be nice to catch a little break here — I have yet to really have phenomenal results from any of the five or six treatments I’ve done so far, which really is a bit scary.

So is the NOT knowing.  Which drug’s working on me?  Revlimid or Dara?  That’s the problem with so many variables.  I was demo’ing a new app on my iPhone last night to help me track dosages for hospital and doctor visits since I can’t remember all of this stuff, and the sheer number of things I take always makes me wonder how you really know which one’s putting in the real work.

Anyways it will be interesting to see what they do Thursday with my Dara treatment.

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.

Marsha Marsha Marsha!

Man I feel like I got hit by a truck this week.  No idea what in the hell is going on but it’s like side-effect-palooza around here.  In no particular order:

  • Heart/chest pain.  This is the scary one to me.  I can’t tell if I’m having heart pain or some seriously Satanic heartburn.  It’s right at the top of my chest underneath my breastbone, hurts like the Devil for 5-10 minutes, and sometimes I can banish it with drinking cold water (sometimes not).  When I was on Velcade back in the day I used to have to take Prilosec to combat some side effects so I started taking that again, but I’m not 100% it’s a GI thing.  Will talk to my doctor Friday, although I’m pretty sure that means it’s time to break out the EKG machine.  Which I don’t mind, but the nurses at CBCI hate the combination of my chest hair and the not-really-sticky-whatsoever EKG pads.  Not quite as much as I do when they RIP THEM OFF LIKE A CHRISTMAS PRESENT.  Actually they’re pretty good about that stuff, I just thought that was a funny image.
  • Body pain.  I’m thinking this is Xanax-related.  I had my sleep schedule pretty dialed in during the last few chemos but every time I start a new one, as some of you well know, it’s time to figure it all out again.  I haven’t been able to sleep like I used to with past chemotherapies on this Dara cocktail so I started popping a Xanax on really bad nights again (I think this new steroid is really messing with my sleep), but then I wake up and my ENTIRE body hurts.  It gets worse through the day.
  • Other random things — minor neuropathy in my calves, exhaustion, temperature.  I may just be coming down with something too.  I’ve noticed I’m so much more aware of my body after four years of chemotherapy and everything else that I can usually point to something and say “yeah, think I’m run down because I’m fighting something off and my system is just taxed” or the like.  Either way something is beating the hell out of my immune system as can be seen from the CBC results.  At this point I’m curious if they’ll do my infusion Friday, which opens up a whole new can of worms — I missed a bunch of the clinical trial doses of my last regimen due to having pneumonia FOUR TIMES during it and obviously that’s not a positive (and also why I’m now on monthly IViG).  I’d really rather stay on the chemo drugs and try to get this goddamn cancer beaten back a bit than be sick.

I went to bed a few hours earlier than normal last night and proceeded to wake up all night long, sweaty and confused as to what was waking me up.  Like 10+ times.  THAT is what the Xanax used to stop, but I refused to take any last night to give myself a break.  Thankfully I’m heading home in a few hours for the day to hang with the kiddo while my wife gets some stuff done, because the thought of sitting here for another seven hours seems like a Herculean task today.

An interesting thing about Xanax (besides the fact that some dumbasses actually use the stuff recreationally) is that you can build a tolerance.  I used to take 0.5’s but noticed they weren’t helping this time around so I asked for 1.0’s.  The 0.5 aren’t working for beans, and the 1.0’s give me a hangover worse than my worst next-day in college.  Except for that one tequila “why is this pebble embedded in my nose night” from undergrad in SoCal, but that’s another story.

As a cancer victim, you (well me, but others I’ve talked to about this agree), are constantly scanning and analyzing every new pain, twitch, bump, skin aberration, spasm, sleepless night, thought, etc.  Is it a new cancer?  A new side-effect?  My cancer doing something?  The drugs working hard (I know this is a myth but I’ll admit sometimes I hope this is the case still) or not working at all?  Am I sick again?  Etc. etc.  I get a lot of lower back pain and I’m always worried, due to having Myeloma and knowing folks who have had vertebrae implode due to the osteoporosis Myeloma can cause, that I’m always one “picking up something heavy” from having my back shatter.  Especially since the only PET scan I ever did showed my lower back as a highlighted spot (and my hip and a couple of other spots where there were bone lesions from this).

Anyhow nothing too philosophical today, just an update since this has consumed most of my thoughts lately.  And don’t get me wrong, I’m actually doing pretty well mood-wise still (feel like I have to keep assuring that), just feel like hell.

Imagine that, cancer sucks.  Someone call the New York Times!

Oh and bonus points if you know what the title of this entry is from.  It’s not a contest, just a generational thing at this point.

Dara week 4-5 thoughts.

In psychology there’s a concept called the “ironic process theory,” or alternatively the “white bear problem,” where an attempt to NOT think about something makes thinking about it more likely.  For whatever reason, unless put directly to the test (i.e., “Rich, DO NOT think about cheesecakey goodness”) I’ve somehow managed to turn the ability to not think about things into the coping mechanism I rely on most of the time.  Perhaps too much, as it generally involves focusing intensely on something else like a video game, etc. But I’ve been doing it for so long I don’t remember a time when I couldn’t just automatically tune out my parents going off on each other as a child, whatever anxiety I’ve had through the years, and certainly all of the fun thoughts brought on by the BIG C in the last four years.

I had some trouble lately doing it last week, unfortunately.  Thoughts snuck in, unbidden, and once present became harder than usual to dispel.  While trying to get my mental state back under control I couldn’t write.  Just as I NEED to write at times, sometimes I just need to NOT write at times, or even think about anything serious — it really can turn into a Pandora’s Box without warning.  Does that make sense?

Little unpredictable things crack the Box open sometimes when I don’t realize the emotional walls are in place and shored up.  I remember, as the dusty twitch in my nose confirms as I glance to my right, that one trigger was just staring last week at a picture framed on a bookcase in my office.  It’s my favorite picture in 46+ years, of Ariana’s hand resting on my finger the day she was born.  She’s my Achilles Heel with this Myeloma thing, if you weren’t aware.

My cancer numbers are another source of anxiety, building towards next week when I’ll find out the results of the first 4 weeks of Dara (get tested Friday before my infusion, and should have #’s by the middle of next week for the Myeloma labs since they take longer than your standard CBC workup).  Hell even my current CBC numbers are a cause for concern — although they did my infusion Friday, presumably because the IViG I take covers the gap, my white blood cell count (WBC) and neutrophil count are WAY low.  As in normally I don’t think they’d do an infusion low.

On the bright side where that’s concerned, this is my off week for Revlimid, one of the 3 drugs I take with this current regimen, so I’m looking forward to that.  It’s a 28-day cycle with the last week free of the Revlimid pills.  Hopefully the numbers rebound a bit since walking around without a working immune system is about as fun as it sounds.

Death is the last part that I’ve had trouble erasing from my conscience lately.  Thinking about Ariana always wends it’s inevitable path towards this, to not being around for my daughter.  Far and away the hardest thought to dispel, it’s just been on my mind lately with all of the death surrounding me.  A diving friend.  A really nice guy I knew from back in the foosball days — RIP Bear and no that’s not a typo, I actually played ranked “tour” foosball for years albeit at a pretty low level and ran a local tourney for quite a while.  And non-death cancer stories too — a friend’s mother, an old friend from my Live Journal days, a close friend with Myeloma in a bad way and facing some nasty non-cancer issues, a text from my mother-in-law asking for a recommendation for a friend’s 28-year-old daughter who was just diagnosed last week with Hodgkin’s Lymphoma.

Regularly this wouldn’t affect me as deeply but all at once has been difficult.

Not that I want any of those notifications or conversations to stop oddly enough — I don’t see those things as a burden but instead I’m pointing them out to note two things.  One, there’s a difference between hearing something like those issues when you do and don’t have cancer.  The folks who go through this stuff with us don’t get this part, or a lot of this really.  They try, most of them, but they’ll never GET IT.  And that’s OK — I think all of us doomed folk would kill to go back to that naivete, wouldn’t we?  I know I certainly miss NOT knowing what was behind that particular door.  But that also means they just can’t provide the same comfort, at least to me.

I lived this with two different therapists (I think you’d call them both “therapists,” my bad if that’s incorrect).  Both were amazing, but one was actually working in a blood cancer clinic.  In one session with her I got more than I did from months of dealing with the other for what should be obvious reasons — it’s all she dealt with.  Even though she didn’t have blood cancer herself, we’re all she talked to professionally.  She’d heard it countless times to the point where she was an honorary member, if you will.

Anyhow the point is I feel like there’s a bond among cancer patients that you just have to experience to truly get — it’s in the same ceiling tiles counted.  Choking back tears in a car in your oncologist’s parking lot.  In nurses having to take a second shot at veins too abused to handle another poke, and a laundry list of side effects and their cures.  It’s wondering if the next time you go into the hospital if you’re coming back out.  It’s the mantras some of us (maybe all of us, who knows) use to get through the hard spots when the thoughts threaten to overwhelm.  It’s laughing in disbelief at the number of medications they want you to take, or in pondering death, not in the abstract sort of way we all ponder it, but in a very real “holy fuck, I’ve got the plague” sort of way.

It’s in asking “why.”  A LOT.

And hearing nothing but silence.

What I’ve noticed though is that when I talk to folks with this shared death sentence I feel better, even just a little.  I would hazard a guess that comes from there being so much helplessness with a diagnosis like this that the ability to even offer a tiny bit of hope to others is empowering, especially when all of the issues with this disease can be so emasculating.  While I’ve found a comfort of sorts in there really only being a few paths to take with this disease, sometimes it feels helpless.  A shitty job I could quit.  If my car turned out to be a lemon I could buy a new one.  But with cancer, at the end of the day, there’s not a lot you can do.  Eat better, get a new doctor, exercise or exercise more, pursue more holistic choices or supplements, etc.

Having an opportunity to even just listen and perhaps as importantly UNDERSTAND  someone else, which I’ve found is what most people just want to begin with, is cathartic.  So don’t get me wrong, I’m not bitching.

I knock it sometimes, but I do appreciate the awareness that people doing 5k’s and climbing K-2 or whatever “for cancer” brings.  However as a pragmatist there’s a large part of me that wishes instead of doing that stuff that those with our shared fate just helped each other more.  For all of the money raised have we cured any cancer, ever?  Does March being Myeloma Month (trust me I forgive you for not knowing that if you aren’t on Twitter specifically following like 1 of 50 or so people) matter?  I definitely could be showing my ignorance but have any of the countless anti-cancer organizations ever cured anything?

I’m sure they all do, or try, to do good.  Please don’t take this as a condemnation of those organizations as I KNOW they bring hope and other things to folks.  But when you are actually a cancer victim it’s pretty easy to slip into this thought process, you know?  Perhaps it’s just crass but as a cancer victim I think everyone has that thought one day similar to “well this sticker is cool and all, but STILL DYING OVER HERE.”

Sorry, but it’s true, admit it.

*crickets*

Damn it.

And sure, I know that sounds a bit downbeat.  Like I said it’s been a tough week and a lot of things have conspired to put me here, at least temporarily.  But to not end on a bummer note, I continue to do better off the massive Dex doses (again I still have to take a 4mg the day after and the day, um, after-after my Dara infusions, but I don’t feel that base level of just pure intolerance, impatience and anger from before that I associate with the Dex.  In fact now my biggest concern is that I feel like I can’t get angry or be impatient at anything, which makes dealing with a 5-year-old, um, “entertaining” and has me biting my lips much more than previously in life.  Especially on a weekend when the steroids (presumably) have kept me from sleeping for two days.  I raised my voice at my daughter this weekend when she was intentionally ignoring me and immediately got this “oh shit, he’s Dex’ing out” vibe from my wife.

My wife and I talked immediately, another thing that I think is helping things at home, but unlike before me being aware of her concerns before she even voiced them helped immensely.  We agreed that a good way to put me in check in case I even seemed like I was approaching DexRich (I really need a better name for that) would be to just ask me if I’m OK to insert a pause in there.  I suggested that.  See?  I am getting better.

I still have no idea what to do about disciplining my daughter, though.  We don’t do physical punishment so short of taking things away, which I do think teaches consequence if done right, I really have no alternatives besides going a bit R. Lee Ermey (drill sergeant from Full Metal Jacket) sparingly to express disapproval or initiate corrective behavior.  I’m afraid if I do nothing I’ll just get walked all over or put all of the disciplinary burden on my wife, neither of which are good answers.  We’ll figure it out, though.  As a family, which I’m here to tell you, before I got off the Dex, would not exist in the same house if things hadn’t gotten better.

BTW, THAT’S the kind of stuff talking to other patients gives you the opportunity to share with those who only have their doctors to go by.  We all know they whitewash things, and while I had plenty of warnings that Dex can make relationships difficult that’s the same sort of advice as “don’t touch the stove.”  It’s just an abstract concept until it’s too late because you experienced it yourself.

Instead, the last six weeks of being Dexamethasone-free things have been really amazing at home.  Everyone’s happier, including me, and my wife keeps telling me how grateful she is (that’s a definite first).  That her anxiety has all but vanished and my daughter and I are doing so much more together now means more to me than most of this stuff.  Which is awesome, but also opens the door for not only another shoe to drop but an ironic one at that since I’m the living embodiment, as I’ve mentioned before, of ironic outcomes.

So in other words I’ll probably get trampled to death by a herd of maddened pugs or something this year.

Fucking pugs.

One thing I would suggest is as a cancer victim if you really want to help another victim with cancer: TALK TO THEM.  Doctors will be doctors.  They speak differently, they detach themselves a lot for self-preservation, and they have different goals than we do.  That’s fine, it’s their job.  But for us?  Send money to pink license plate holders or whatever other thing is not curing breast cancer or run that marathon or climb that mountain but please, make time to just TALK to someone else with your disease (or any cancer, it’s all relative) as well.  Cancer patients don’t need to see other cancer patients doing superhuman things to feel normal.  We’re not normal and honestly for a lot of us it just makes us feel like shit if we can’t do that stuff.

Talk to one another instead.  It might be more helpful, to both of you, than you know.