VTD-PACE, another SCT … must be Christmas.

I, um, yeah.

Fuck.

Got a call that registered as my oncologist yesterday, so I was emotionally unprepared when instead of a scheduler confirming something it was my entire oncology team. I apparently came up at the office’s weekly meeting.

Have some bullet points.

  • This Friday we’re stopping the Daratumumab. It’s not working on any of the numbers at this point except possibly slowing the advance of the Myeloma slightly. I’d share the numbers but for some fucking reason all of my labs show up on HealthOne’s patient portal except my Myeloma labs. USEFUL.
  • After review the team wants to proceed with VTD-PACE. I went into detail on what I know about that treatment in this entry, but I meet with one of the team on Friday to learn more and schedule it. Ninety-six hour infusion of Dexamethasone + Thalidomide + Cisplatin + Doxorubicin + Cyclophosphamide + Etoposide + Bortezomib. The first one will be in-patient, the next ones outpatient depending on the outcome and complications of the first treatment.
  • I was told that with few patient exceptions PACE works as the “fire putter-outer,” which I need now.
  • After a 50% or more reduction in my M-Spike and IgG, which they expect to happen within 2-3 treatments, they want me to do a stem cell transplant (my 2nd) six weeks later (time to recover).  This would be August-ish.
  • Once that’s done, most likely a CAR-T clinical trial. They are starting one up in September at my oncology office, but if that’s full they will refer me out.

This has broken me for the last 24 hours. Normally, or whatever the Hell that even means anymore after four years of chemotherapies and an SCT in another state, I can mentally compartmentalize bad news and just examine it in small, controllable chunks. Things like this, however, make my emotional wall about as effective as one made of sand in the face of a hurricane. I flip from this surreal sort of disbelief that this is happening, and happening so soon, to outright breaking down.

It’s hard to describe what it’s like to not be able to look at your own daughter without losing it. I have zero control right now.  I just … I can’t.  Not today, sorry.

Was sitting here thinking about how to express how I’ve felt since yesterday. With the exception of last night, when I bleached my brain out with a combination of the darkest, grittiest metal I have cranked so loud it hurt and a ridiculous amount of Crazy Train, I can’t even type the words. It’s too painful.

This is about as close as I can approximate:

Shame that show never lived up to its pilot.

As a cancer victim I’ve often marveled, usually in a disappointed sort of way, about the way my perception of life has changed after four years of this disaster. One example is how on that call yesterday I was told to probably expect more transfusions. Ever since the first one I’ve always felt guilty about being transfused, like there was someone more deserving or needy of that blood than me. I feel the same about staying in a busy hospital, like there’s always someone more deserving or needing that room and I need to apologize for taking up space and time.

The dark epiphany is realizing that no, those things exist for people like me. There’s a snap to reality there about how really sick you are that can be pretty brutal, this sudden and painful paradigm shift between looking at the worst-case scenario world you thought you understood and the universe making sure you know full-well that you are in fact in the epicenter of this nightmare.

I don’t know if that’s explainable in a real sense to people who haven’t experienced it. Let me put it this way: you know you have a terminal disease. But there are days when you KNOW you have a terminal disease.

Different levels of comprehension and reality sinking in.

Probably not going to be writing again until next week from the hospital (I promise I’ll include pics). I’ve penned a lot in the last few days, publicly and privately, and I just need Pandora’s Box closed again for now and to get off this pedestal and fade into the shadows to recharge so I can function.

On another note, as a relatively new user on Twitter I discovered two things this week:

  • You can “mute” people that your friends RT so you no longer see the RT’s. Way too much political stuff lately for someone who sits in front of several news feeds all day. I just want to hear and share cancer-related stuff so that was pretty cool — I can keep reading people’s Tweets but cull out with a lil’ work most of the non-cancer stuff I keep having to scroll past. I say this like it’s some new thing but I’m sure everyone but me knew it. I can say, however, that after a good hour of work today I have scrubbed my feed clean and it’s like a whole new experience.
  • When your feed is 99% cancer-related news and you’ve been following 5-10 new people a day from all sorts of flavors of Doom, DO NOT READ YOURSELF AWAKE IN BED WITH IT.  I can handle most stuff but I have ZERO defense against child cancer stories, which were the first things I saw from yesterday. Sobbing yourself awake as you imagine what it must feel like to be told as a parent that the therapies are being stopped and to just enjoy your remaining time together is … I can’t even imagine. I do know I’d rather be the recipient of the soap in a sock code red beating from Full Metal Jacket than ever have that experience in bed again.

I can’t turn this entry positive. I give up.

Cya’s.

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.

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.

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!

 

Ouch, quiddit.

Woke up this morning exhausted after eight hours of sleep and with lower back pain so bad I can barely think straight.  Why I did not bring some sort of pain pill to work today is truly beyond me.  Back pain can be associated with Dara, no clue if they are connected yet though.  Hoping the exhaustion is more a factor of taking some Xanax last night to make sure I slept and the usual Xanax hangover.

Definitely grabbing an Oxycodone or something at lunch, fuck this.

Walked into our office manager’s office and her PC was misbehaving for the third day in a row.  Seemed to be related to the USB port that the Logitech wireless dongle thingy was in (couldn’t see a mouse cursor at a window I should have).  She believes the PC is just scared of me, and I have to admit anything more difficult to fix and I would have put my foot through her PC case.  I think it knows me well enough now to stop messing with me when I’m pre-latte and in pain.

Must.  Make it.  To.  Lunch.

Saw this yesterday and want to talk about it but I just can’t think straight today, posting it here to reference later.