Like I’m almost gone, yeah.

Sorry I didn’t post this on Tuesday; been in a bad headspace this week and wasn’t in the mood to write. Not sure I’m really ready either but I need to get a few things down and out of my brain basket.

So far so good on the VTD-PACE front.  I’ve been fairly tired but mostly just dealing with the repercussions of the massive Dex dosage.  I didn’t go into the exact dosing of this witch’s brew, but it’s:

  • Days 1, 4, 8, and 11: Bortezomib 1mg/m2 IV push over 3–5 seconds or SC
  • Day 1–4: Thalidomide 50–200mg orally daily at bedtime + dexamethasone 40mg orally daily
  • Days 1–4: Cyclophosphamide 300mg/m2 continuous IV infusion over 24 hours daily + etoposide 30mg/m2 continuous IV infusion over 24 hours daily + cisplatin 7.5mg/m2 continuous IV infusion over 24 hours daily + doxorubicin 7.5mg/m2 continuous IV infusion over 24 hours daily.

That was taken from here, BTW, which is a pretty handy web page for chemotherapy.

I’m not feeling good.  The problem is I’m not sure how to draw a demarcation line between what is happening as a result of the chemo versus what is happening as a result of marital issues.  I feel pretty deflated, at least from the previous week, and I can’t easily sort out what goes into what pile o’ sucking as easily as I wish.

Physically I feel pretty run-down, but OK for the most part.  GI is fine, blood counts have actually gone up slightly since last Friday when I was released (i.e., no transfusions needed) although they are all still pretty low.  Nausea daily, including a weird almost insta-vomit situation when I sit crunched forward a bit.  Pain is up there but I had a Neulasta shot Sunday which I think is the guilty party there.

My good attitude is pretty much gone, sadly, which I mostly attribute to my marriage. Not going into super details here but the net-net is that after so many months of peace, mostly driven (IMHO) by me beta’ing out of most issues to somehow make up for 3.5 years of Dex-driven Rich, we got into it this week and I’ve come to realize a few things that I had hoped were in the rear-view not only aren’t, but probably never will be. The unfortunate thing about trust is that once broken in a relationship, even a bad one (actually especially a bad one), there’s so much scar tissue left behind that it’s hard, if not impossible, to ever really get back to a pre-trust-issue place.

My wife thinks I’m Dexing out again. I may be, but I also was feeling really positive about things until Tuesday night and I’m not convinced she’s correct so much as anticipating and reacting to protect herself from a potential, not a reality. I don’t feel snippy, angry, negative (well I didn’t until that night, anyways).  This past weekend I just took it easy, watched my mouth and did the usual steroid thing the Doomed do when given this much of this crap:

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I posted that on Facebook and immediately had 8-9 friends tell me to come over.

Further, I don’t see any issues I brought up during our argument as anything abnormal. Sadly, although I’m happy that I chose multiple times to back off and cool down before I let something un-take-backable fly, all of this doubt has ruined my progress mentally/emotionally and left me adrift.  Now I feel like an enemy combatant again behind the lines when I’m home, and that sucks.  Mostly because I finally had let some hope creep in that we could reverse course on circling the drain, and every ounce of that is now gone.

Just once I would like actual SUPPORT during chemotherapy. Driving, errands, cooking — that’s great. It’s not SUPPORT, however, it’s busywork that would have been done anyway simply due to me working 50 a week.  I’ve driven myself to just about everything except some stem cell-related stuff years ago and roughly 2-3 appointments/hospitalizations. In four years.

A hand held.  Questions asked borne from caring, not rote. A hug. Hell I get more of that stuff from random employees at the oncologist.  Instead at home I deal with never-ending verbal reminders of how I ruined someone’s life and subtle but obvious tells that no matter what I do, how kind I am, there is no way back.  From a place that Dex took me, which seems kind of unfair.  Also gone with the rest is the faith that post-me my legacy will be my daughter being told how awesome I was, not how much of a steroided-out prick I was by someone who fell out of love years ago in this and is incapable of understanding how important that legacy is to me.

Granted I never was Mother Theresa but I wasn’t THAT fucking bad.

Tell you what — when you go through hard times you really do see what kind of human beings are around you.  Also, and this comes from someone who won a lot more in poker than they ever lost, someone sober’s first reaction is almost always the honest one. Tuck that away somewhere.

Unfortunately with my peace of mind went all of my serenity and ability to truly relax and rest at home, which is a shitty thing when you are trying to focus on a giant dose of chemo and effects that could be coming.

You get used to it, I guess.

I’m wondering when the other shoe drops with the cancer treatment.  This has caused a decent amount of anxiety on top of everything else. I tried to cancel a lab appointment next Monday, for example (that’s a two hour commitment to me given where I work and live versus my oncologist) and was told that they need to keep it to monitor my counts tightly. So that’s like two weeks post-hospitalization?

Anyhow, met with a doc for a scheduled follow-up Tuesday who had nothing new to add except for prescriptions for an anti-fungal and a anti-bacterial. Have another meeting and more tests with another doctor on Friday.

Had a bunch of epiphanies about life in the last few weeks that I was going to consolidate here but I don’t feel like it’s the time to get into those.  I did however decide that at my funeral, assuming anyone actually listens to my requests, they play this song.  Posted this up Friday when I left the hospital:

Was listening to that last Friday and realized that it meant a lot more to me than just a allegory for leaving the hospital after a week.

Sometimes I feel
Like I’m almost gone, yeah
A long, long, long way
Way from my home, yeah

Indeed.

Alpaca outta f%&king nowhere.

Now four years into this shitshow I’ve decided that the word “fatigue” is my least favorite side effect description.  Fatigue?  Fatigue is what you get when you’ve had too much sun at the Derby party.

“Oh Rhett, ah do declare that I’m a tad fatigued!  Can you find the negro for some more mint juleps whilst ah retire indoors?”

Sorry, that’s how I envision Derby parties: a bunch of white Southern-accented racists in stupid hats.  Your mileage may vary.

“Fatigue” is too dainty (another word I associate with Derby party-goers) a word, and it’s woefully inadequate in describing the narcolepsy-esque exhaustion I’ve had from either/both my disease and the various chemotherapies.  Which I bring up because since I started Dara, my hemoglobin is so low that I’ve had 4 transfusions in the last few months. In fact I’m typing this in on my phone (ugh) from an infusion room chair while waiting for some CBC results to see if I need another … I’ve been dead on my feet all week.

And on that note while dealing with the extreme pit of narcissism that is my mother on the phone I was just told my first blood samples, which they took again due to what they thought was a clot in the tubes, weren’t actually clotting in the tubes.  It was that there’s apparently so much protein in my blood it appeared to be clotted.

Sighville.

Bought the kiddo a stuffed animal from the gift shop while I waited for a hastily-scheduled transfusion appointment.  I know my wife thinks I spoil my daughter but there’s a purpose beyond just loving to give her stuffed animals — I think it helps when I’m delayed at appointments in the hospital or oncologist to bring her something fun to turn the experience positive.  My logic is simply that in doing so, I can hopefully erase any negative connotations for her right now with all of this.  She has been taught about death, and she knows I’m sick, but she hasn’t put the two together yet.

I just can’t go there with her quite yet — not only does she not have the maturity at 5 to really come to grips with this, I don’t think, but I had to soften it somehow since we obviously had to talk to her about it.  Between the constant doctor visits and people (irritatingly) talking about it in adult terms in front of her, it’s not like she didn’t know something was up but more importantly we were afraid she’d think I had something she could catch.  I’ll just take those tears for her in the meantime and she can have a stuffed animal instead of worrying daily that daddy won’t be coming home that day.

Speaking of tears, I’m not a giant fan of  trying to hide them in an infusion center so I’m out.  Have fun, hug the loved ones and thank you, whoever gave this, for donating the blood I needed today.  And I’m sorry for what I and some of Colorado’s finest medicinal plant life are going to do to said blood after the kiddo goes to sleep tonight when I try to relax and erase this goddamn day from my brain.

Oh but to end on a laugh, whenever something happens to me that’s a surprise (like this transfusion) my mind immediately goes to this, one of my all-time favorite memes.  Enjoy …

mekjol8

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.

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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.

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.

Releasing the chocolate hostages.

It’s been a long two weeks with some physical blockades preventing me from updating here, but I wanted to get a few things down before they get lost in the morass of my leaky memory.

So as a recap, after several recent recurring attacks of my long-running battle with diverticulitis the GI doctor I see here wanted me go the surgical route.  After the usual meetings and phone calls between the oncologist and surgeon the date was chosen, January 18th, and I began preparing.  Strictly for the surgery this isn’t anything too onerous, just the usual kind of prep you’d do for a colon-related exam/surgery to clean things out, not eating/drinking after a certain cut-off and in my special case as a cancer patient some antibiotics the night before.

Not entirely sure how a single dose of an antibiotic is supposed to stave off the hungry hordes of bacteria, but not sick yet (knock on wood) so as usual people know more than I do.

The wife drove me down to Rose, they prepped me for surgery, and the next thing I remember I was in a hospital room.  The surgeon was unable to do my surgery laparoscopically as he decided to remove not just the original one planned but two sections of my colon and fuse it all together, nor am I 0% body fat guy either which would have helped.  Instead I got cut wide open and then sewn up with a suture that goes from my belly button to my side.  Seriously, I have staples across my stomach.  Pretty creepy. I’d be tempted to make a Nightmare Before Christmas face of it but with my luck it’d cause an infection and kill me, which is one of the more stupid ways to die.

Although kinda funny.

I had a really cool conversation pre-surgery with the anesthesiologist.  I had no idea how moment-to-moment their job was, quite frankly.  Pretty neat.  He said I wouldn’t remember him though so here’s to you, um … shit.  Mr. anesthesiologist guy.

Anyhow, at this point recovery consisted of pain management, which we all did a terrible job of since I’ve been in pain every waking moment for a week straight, and getting my bowels working again.

I started on IV Dilaudid but unlike when Sky Ridge was trying to kill me late last year it just wasn’t enough.  Unfortunately, even though Rose and Sky Ridge are both HealthOne facilities, I couldn’t find someone willing or able to look into that stay and find out what the dosage was.  That’s nonsensical to me, but whatever.  Net-net was I could not get them to increase it to a level that worked or was close to the impact it was having at Sky ridge (instant 0% pain, hallucinations, good sleep), so then we switched to Fentanyl.  I sat there one of the days with the “fun-button” set to six minutes and it took 36 minutes to get to a dose where I was remotely even feeling it.

In the meantime they were supplementing the different pain meds with some other drug called Toradol, I think?  Not sure but it didn’t work for beans either.

So the next thing you have to do is pass gas and get your bowels moving again.  The problem with that, and a lot of this, is that it’s really impossible from a pain perspective to bear down in any meaningful way.  Hell it’s impossible to do anything in a meaningful way except not move — it’s incredible how much we do involves those core stomach muscles, some of which I believe were cut during my surgery (intentionally!).  Either way you’re constantly worried about tearing something open, which leads to fun things like death, colostomy bags, death AND colostomy bags, etc.  Eventually things started kind of working, although it all hurts so bad I’m still not sure where I’m at with it.  I’m avoiding fiber and spicy stuff like the 5th, 6th and 7th plagues of Egypt though.

I did notice that during this process I had opened a page in my iPhone browser with euphemisms for pooping, hence the title of this blog entry.  It was a tie between that and “downloading some brownware” if anyone was curious.

My folks visited pretty much every day.  I’ll admit that makes me a bit nervous because historically things like that have been used against me with them, but it was nice for what it’s worth.  My buddy Derek came to hang out, which was awesome.  My daughter and wife only came once and nobody else, which kind of saddened me.  Don’t really feel like getting into that right now.

I was released Monday (23rd). The only real rest I got in the hospital was the last night I was there when I got the nurse assigned to me to get me a Xanax from the resident, which was good although I was zonked out when the surgeon visited and didn’t get to ask some questions I had.  No worries, however, as I meet with him this Friday.  It’s just not possible to rest in hospitals, oddly enough. Too many people constantly coming in to check on you, cables tangled, no privacy, etc.  Now I’m home resting, which is nice even with my daughter sick with yet another respiratory thing (c’mon IViG and hand washing!).

A few omnibus thoughts to this whole ordeal in no particular order of logic or pithy-ness:

  • If the longest IV tube you have is 3′ you are bad, and you should feel bad.  This is not a knock at the nurses at all, who were universally wonderful — not just saying that, they rocked.  But it’s retarded to me to not have in stock longer IV tubes or extensions available when you may be attaching patients to them for multiple days.  I had to untangle myself every single time I got up, which was frequently, and I managed to pull my IV all the way out once.  It’s cool if I’m comatose, but if you want me walking 4x a day and I have to do this weird log roll thing to get out of bed without falling or ripping everything open?  Not so much.
  • Along those lines, the tape-on Pulse Ox finger thingies are crap and get ruined every time you wash your hands.  Just use the grey rubber ones that you can jam right back on.  Not only are those less wasteful but if I need to type something I can move fingers.
  • Why do the nurse call buttons in hospital beds never work, so I’m forced to have some gigantic remote on a cable constantly tangling with everything to manage as well?
  • If you are going to charge me (well, my insurance company) a billion dollars a day, could you please not stock the courtesy fridge with the worst shit on the planet?  Seriously, look at the ingredient list of the popsickles. I already have cancer, I’m not looking to buy tickets to the sequel.
  • Unless Led Zeppelin just finished partying in my room (and even then it’s iffy), if you wake me up to empty an empty trashcan during the first time I’ve been able to sleep in a day while cheerfully yelling “HOUSEKEEPING!!!!!” I will curse you out until you leave my room in tears.  I’m sorry if this causes you PTSD.  Actually I’m not, fuck you.  Seriously.
  • If you are dealing with an oncology patient, the last thing we ever want to hear unless we’re intentionally trying to game the conversation this direction is “let me check with the resident.”  Look I totally get what residents are and what they do.  That being said, I have a really rare cancer that even doctors with a lot of skill and experience can (and have several times in my case) blow diagnosis because of.  Check with the resident if you need to know how to make my bed.  Check with my oncologist or surgeon for anything serious, OK?  You don’t have the experience to make decisions related to me.  Sorry.  Again I get it, but I’ve had some dangerously stupid things happen in hospitals due to residents and I just don’t have the body and systems to withstand their screw-ups anymore.

I know that all sounds negative, which is a combination of my sense of humor and being in constant pain for a week.  I’m in a decent mood, I guess, all things considered, although it was pretty dark before and during this all.  I skipped writing it before because I just didn’t have the words, and during because I couldn’t type more than two words with all the things going on and the pulseox on my finger making typing really frustrating.  But there’s something I’ve been struggling with that I’m not sure is going away as it deals with this all in general and not just the surgery.

I didn’t think I was making it through this.  That’s a pretty common thing to think, I suppose.

Not so common perhaps is I was kind of hoping I wouldn’t.

I know that sounds “bad,” in a lot of contexts.  I’m just so tired, man. SOUL tired.  This is more than just the daily “fatigue,” a dainty word for the 100% fucking exhaustion that comes with this cancer and the chemo.  I’m talking tired of doctors and appointments and stress and chemotherapies and shitty marriages and whiners on Facebook and jobs I hate and cancer and every day feeling like a worse version of the day before and infusion centers and cancer clinics and being poked with needles and the looks you get as an outed cancer victim and watching important friendships drift away and not having cats and having a disease dictate the quality level of me being a father and this shit never fucking ending and drugs ballooning my weight so my self-image is so bad I don’t look in mirrors anymore and the effort it takes to put new bricks in the emotional wall and, and … and.

I mean it never stops, you know?  Even more amusing, in a dark way, are the 1-2 folks who bothered telling me some version of  “Jesus is just giving you what you can handle,” etc. Really?  REALLY?

Not even going there today.

I know this is all a self-pity spiral and best to avoid.  Not sure how to, though. I wasn’t stoked to do this surgery because it was risky and the point of living in this ridiculous way now is to stay alive for Ariana.  Who won’t appreciate any of it until long after I’m gone, if ever.  It’s just hard.  And staring at those ceiling tiles in yet another hospital room, again, it just makes you wonder at which point you get to just stop fighting.  Am I supposed to be excited now to start yet another new chemotherapy?  I’m sure this one will work, right? Another clinical trial?  I feel trapped into living.  That’s a REALLY weird situation to find yourself in.

More miles on the car, on the body, on the mind and heart.  How long does this have to continue?

I don’t wanna end this negatively, though, just not in the mood.  So wiping away the tears I will close with this instead, a humble thank you to the nurses who took care of me on the 6th floor of Rose Medical from the 18th to the 23rd.  I have never had a stay in any hospital where ALL of the nurses were so friendly, caring and treated it like more than a job, which a patient is so nice to experience.  I hope the universe thanks you in some karmic rebalancing far more powerful than what I am capable of with just a simple “thanks.” But thanks all the same.

Imagine if she could read …

I gave Ariana a pad to draw on months ago from my desk, not even really thinking about which one it was. Found this and 100 more drawings this weekend on the pad’s pages while digging through her craft stuff and it just broke me. There’s some annoying English class word for this … allegory? Yeah, allegory. This is a perfect allegory for a day, any day, in my life, my personal version of the six-word story that I, ironically, didn’t even write.