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.