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:

18765727_10154635232038097_3550553779107094158_n

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.

The bad sevens.

Not even sure where to begin this.

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

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

They’ve done nothing for my mental state.

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

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

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

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

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

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

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

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

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

Yeah I’ll get right on that.

My hips are a code violation.

Eventful week, and not really in a good way.

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

giphy

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

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

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

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

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

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

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

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

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

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

Deja vu — ouch!

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

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

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

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

onpro-device

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

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

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

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

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

Which incidentally is a great country music song title.

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

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

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

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

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

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

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

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

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

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

Err, eeek.

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

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

 

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

And to cop lines from the UFC advertising, apparently.

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

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

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

Use it.

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

With Trump in office it’s probably Doc McStuffins.

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.

Clinical trial start.

So Cycle 1, Day 1 of the clinical trial.

Spent about eight hours at PSL waiting for Fedex to deliver one of the drugs, taking the drugs (14 pills, and then 3 later in the day) and then having an EKG and something like 7 blood draws (so they can see what’s going on with the drug in my system, I guess?). No vicious side effects except a headache and this weird pain in my legs, both of which could be incidental or caused by shotgunning a quad soy latte when I was finally able to eat something 2 hours after taking all this crap. But not toxic CNS failure or anything so yay!

Mostly feel bad for Amy since I didn’t notice until today that they upped my dosage of the corticosteroid they use (dexamathasone) back to the highest level, which in the past made me seriously roid ragey. We came up with a safe word tonight however in case I get out of hand, something like “I’ll fucking shoot you if you don’t calm down, you jackass.”

Luckily she doesn’t know where I hid all the ammo.

A reality check.

Sorry, as usual, for not updating more.  The holidays were terrible and caused so much stress (family stuff) that it felt like all I could do just to survive, much less dwell on everything else.  I think I mentioned it in the last entry, perhaps not, but my mental health effectively waxes and wanes with whether I can keep the emotional walls up and not really think about the horror of this diagnosis.  When other things damage the wall, it all comes flooding back.Nothing much is new, other than a better yet sadder understanding of those around me.  I wrote a letter to a parent that I never sent to clarify my thoughts, and realized it would suffice as an entry here for now.  Life is OK, or as OK as it can get when you just step around the elephant in the living room and try not to acknowledge it’s existence. Anyways, a portion of that letter …

I have a rare and terminal form of cancer.  That isn’t grand-standing, “pulling the cancer card” or being melodramatic, it’s fact.  While treatable and thankfully caught early, unless something changes at some point we will not be able to keep these numbers down and this disease is going to start attacking my organs, assuming the damage it is doing on an ongoing basis to my immune system doesn’t do me in first.  As you may know, what generally kills you with cancer isn’t so much the disease itself but what it allows to be done to your system.  I got to experience that firsthand when I was in the hospital for four days with pneumonia recently (one of the primary killers of people with cancer).  In fact I think, of all of the time in the last few years of staring at hospital ceilings while trying to maintain my composure, that it really occurred to me that this is probably how it’s going to be at the end.

Every time I get a runny nose I have to think about that.  I can’t really go to children events safely, although I try to for my daughter’s sake and my own, mentally.  I feel like I sit on the sidelines too much as it is with her due to this nightmare.  I actually risked my life just to go on that Disney Cruise for God’s sake – probably the worst idea, from a health stand-point, I’ve had to make.  But I had to balance whether it was more important to take a risk and make at least some memories with my daughter versus not knowing if I’ll even be around a year from now.  I’m not sure if you know what that kind of a decision is like, but I hope you never have to make it.

As best as I can describe it, when I was diagnosed the world went from spinning on its axis at 600 mph to 0.  But just for me.  I watched as everyone else got to continue their lives like nothing was wrong.  Except mine had just ended.  I suppose that’s what it’s like in prison, too.  Staring out the window at a world that has stopped for just you while everyone else gets to go on living like nothing happened.  With most things, as I’ll touch on in a moment, I’ve just given up and accepted my new role.  Some stuff, mostly related to Ariana, I still refuse to even if I should.

The sad thing is, my decline towards the end could start in earnest tomorrow.  Or the next day.  Next week, next month … whenever.  No warning, just the starting signs of the end.  That’s the other fun thing about myeloma and cancers in general, and why the local oncologist wanted a deeper response than the Mayo Clinic.  As long as this is in my system I am in imminent danger.  

Granted, you and I don’t stress about a lot (pretty sure I inherited that from you) but that’s one that keeps me up at night.  Every night.  And it probably always will.  People talk about living with cancer a lot that have it and in the literature about it – what people who don’t have it rarely understand, however, is that it’s a mental and emotional battle, and honestly, most of us just give up.  I’ve already met people who are dead now from this and other forms of cancer.  Did you know that?  I’ve met folks who have given up and just refused to deal with chemotherapy anymore.  I keep going for my family, but I’m pretty sure if it wasn’t for Ariana I’d be in that boat.  What I’ve learned in part by doing so, however, is after a while you become so numb from dealing with the horror that you just don’t have it in you to do so anymore, and you get a bit colder, a bit more aloof, a bit quieter.  It doesn’t ever go away, trust me.

I vaguely remember you making a comment, I think to Amy one night when we were all together, about how when I was diagnosed was the only time you’ve ever seen my scared.  That fear has never gone away.  Not for a week, a day, a minute.  In some ways it’s hardened me, although it’s made me so aloof in doing so that I have issues communicating with anyone I’m close to anymore.  Imagine what that kind of fear is like, if you even can, that fear you saw a glimpse of.  Imagine living with it as a constant companion.  Look me in the eye sometime, I bet you see it.

Getting back to Ariana and this, I have had to enter into therapy and take fairly high-dose anti-depressants simply to get through the day mostly because of her and how the cancer is going to affect her, not me.  I have had to learn that if I focus any longer term than the current day I actually begin to emotionally break down – the thought of orphaning my daughter, which is one of the most traumatic things a child can experience, starts flooding into my head.  Every song on the radio seems to be about loss, every comment on a podcast I’m listening to applies, every thought that enters my head … it’s so upsetting to me that it actually physically shuts me down.  There are nights it hits me out of the blue when I have the strength and energy left to put her to bed and read to her.  She’s at the age where she’s started asking questions about why I am always going to doctors and why we were in Arizona, and I don’t even know what to tell her.  Sorry, honey, daddy’s dying?  She cries when she can’t find her blanket, how will her three-year-old mind work with that?

Most nights that I put her to bed I then go to my room and cry for a few minutes.  Even Amy doesn’t know that one, she just thinks it’s when I go to the bathroom.  Or she does and just respects me enough not to ask about it and risk upsetting me when I imagine she notices how glassy and red my eyes are.

You may or may not know this, but most children effectively wipe their minds of memories around age 5.  Did you know that the top goal in my life is to make it past that age, simply so she remembers who her father is?  Have any idea what it’s like waking up every day and that’s your entire purpose in life?  To make sure you live long enough that your daughter remembers you?  I talk to other parents and they are already worried about things like high school, the internet, the opposite sex, drugs and alcohol, accidents, driving.  They say this shit to me and I can’t even relate.  I just want to live long enough to spend more time with her.   That’s it, the rest of life can just go away.  It’s all I want.

If you want to know what that’s like for a few minutes, write her a letter from her dead father.  Try to figure out what you’d say so you can get that minuscule an amount of peace that your 3 year old will someday know what her father was kind of like.  I have a stack of those in a safe deposit box for her, did you know that?  The tickets from our trip to Tiny Town are in one, and the stubs from our day at Disney World.  Pictures, and lil’ trinkets and things.  Pages of letters with who my favorite bands and their songs were, stories from when I was a child, life lessons, but mostly just how much I loved her.  Because chances are there will be nobody to really tell her any of that, at least in the way I wanted to share it.

So like I said, someday I am going to wake up to find that the myeloma has begun my end.  Again, that’s just fact.  I live with that every single day.  It’s why I have to take Xanax most nights simply to sleep and stay asleep, because I’ve found if I don’t that when I wake regularly at 3 am to the thought of “I have cancer” because the drugs I take to battle it make me sweat like someone poured a bucket of water on me in my sleep, I have a prayer of getting back to bed and at least getting a little rest.

I also live with the fact that, from everything I read, the end via myeloma is extremely painful and unpleasant.  The funny thing is, of all the horror involved with this that’s the part that worries me the least.  I guess I just haven’t thought about it enough, but I’m sure at some point that will start grating on me too. 

Now about those treatments, I take chemotherapy drugs, as you know, 21 out of every 28 days, and several ancillary drugs to keep me relatively safe while doing so.  Even at the lower doses I now take, the steroid keeps me from sleeping well (and I think causes that sweating issue) and causes irritability issues that force me to restrain myself constantly when dealing with everyone from Ariana to random strangers.  The Revlimid is even worse.  I am tired from the minute I wake up until the minute I go to sleep.  I have found that unless I drink a good 32 ounces of coffee a day (which is why I now bring a French Press to work every day as you’ve seen, since that’s over $20 a day at Starbucks otherwise) I cannot make it until 5 pm.  As it is, even with the caffeine by the time I get home I am rarely able to do more than sit on the couch even though I only have an hour or so with Ariana a day before we have dinner and she goes to bed.  I try to come up with games for us to play where I can lay down, and a lot of nights I’m so tired that even though my favorite part of the day is getting her ready for bed and reading to her and telling her stories like I sort of remember you doing for me, I just don’t have the energy.

Every month I have a 30 minute phone call with both my pharmacist and Celgene themselves to get my next prescription.  I get to talk to a stranger about how yes, I know if I have unprotected sex I’ll give birth to a child with birth defects (Thalidomide babies, since Revlimid is a Thalidomide/Lenalidomide extracted drug).  Yes I know if my daughter manages to get a spec of Revlimid in her mouth it could kill her or permanently disable her.  Etc. etc.  It’s a fun phone call.  Oh, the chemo also causes a side effect (exacerbated, apparently, by the stem cell transplant) affectionately called chemo brain.  I used to be considered sharp, had a great vocabulary, etc.  Now I stay silent a lot more because words that used to come easily to me are just gone.  Memories are blanked, and I just stare emptily at people who bring up things we’ve done together that I for the life of me can’t even picture much less remember.  My internal calendar is totally warped to the point I have to put reminders in my phone just to remember basic stupid things.  It’s embarrassing at best and thoroughly depressing at worst.  I always thought my brain was about all I had going for me in life, and now that’s crumbling apart.

Once a month, I have to go all the way downtown to get an IV of Zometa (Zolendronic Acid, I believe) because one of the fun side effects of myeloma is the damage it does to bones.  The nurses regularly have to poke me multiple times and comment how beat up my veins are, and at some point (or perhaps when they change my chemotherapy to an infusion-based instead of oral regimen) I’ll have to have a port put in.  I think mom had one of those for a while with her heart troubles.  Imagine spending the rest of your life with a plastic hole in your chest, though, just to stay alive a few more days.  Anyways, the Zometa infusion is fine.  That is, until about 24 hours later when the pain and flu-like symptoms start, and then the next 48-72 hours are a nightmare.  I don’t think its’ pain on the level you’re dealing with with the sciatica (sp?), as nerve pain is about as bad as it gets.  But there’s no escaping it.  Your actual bones hurt, and for some reason so do most of your muscles, which tighten up so bad it’s difficult to walk or even stand up.

Did I forget the best part about that infusion?  Zometa apparently has a 5% chance of causing osteonecrosis of the jaw in people who take it.  You and I both have a pretty solid background in statistics – how many treatments do I need to take before I’m at such a high risk it’s almost a certainty?  Do the math.  Don’t share it with me, I already know.  Imagine that dental appointment though, when your dentist tells you that your jaw has begun irreversibly rotting and they’ll have to start a lifetime of cutting away chunks of it.  And people wonder why horror films don’t really bother me anymore.

One more fun and recent addition is they noticed when I was in the hospital for pneumonia late last year that I don’t get enough oxygen at night anymore.  After completing a sleep study with Parker Adventist Hospital and going over the results with a doctor, I am now going to have to start sleeping with a CPAP device.  That’s a machine with a facemask on it to keep me from dying in my sleep, apparently.  The hits just keep coming, as they say.

I won’t even get into the less polite side-effects like the constant stomach problems, etc.  But believe me the list continues.  There is one last fun one, which is not only is my system effectively incapable of losing weight, I gain it at the drop of a hat due to the steroid and the anti-depressant.  I was in the best shape of my life when I was first diagnosed, if you recall.  Now I have to hang my head and shop in the XXL racks and deal with the embarrassment of family pictures and tight clothes.

So what’s my life like now?  Most weekends I spend sleeping late and napping.  That’s the only quality time I’m able to get with my daughter but I rarely have the strength and energy to do that.  I spend most of that time, when I’m awake, trying to pretend to be normal and thankful she doesn’t notice yet, and trying to cope with the fact that at some point she won’t want to (or be able to, because I’m gone) spend time with me anymore and I’ll have permanently lost that due to this disease as well.  In other words even the time I have now I can’t spend the way I want.  I can’t take her the aquarium because I can’t be in shoulder-to-shoulder crowds of people due to my immune system, nor do I have the energy to deal with it anymore most days.  We eat at slightly odd hours to avoid crowds in restaurants.  Hell I’m afraid to kiss my daughter half the time because like most kids her age she always has some sort of respiratory thing going on.  I have to wash my hands like someone who has OCD and carry a bottle of hand-sanitizer everywhere I go.  I don’t even drive my family around most of the time – I’m so tired I’m afraid I’ll get us in an accident.

I say this so you understand that the word “fatigue” rarely sends the message of what it actually is like to live it.  Fatigue always sounds a little tiring, not like something that is actively ruining any enjoyment you have in life.

My own personal life?  I don’t have one anymore.  One of the weird things about cancer that a lot of people with it notice is that when you are diagnosed, you stop being who you were.  I am no longer who I was two years ago … I’m now a cancer patient, and that’s all I’ll ever be.  Maybe that’s like being an alcoholic or drug abuser?  All I know is I don’t see the world the same anymore.  Honestly, if it wasn’t for Ariana I wouldn’t even be here now – most of the reason I started therapy was that I was suicidal when I found out about all of this and things began progressing.  I don’t want to be this, period.  It’s not fun, I don’t enjoy life anymore at all outside of my daughter, I have trouble dealing with the anxiety (to put it mildly), I have trouble with the lack of support I feel from most of those around me, and what little quality time I can muster with my daughter is always tainted with the fact that at some point this is going to destroy her just as much as if daddy took the shotgun down to the basement bathroom.

Try living with that thought for a day.

I have no more real goals.  I can’t dive anymore, safely, even in a swimming pool.  I doubt I ever will again, and after a year and a half living this wretched existence I have trouble even remembering what it’s like.  I can’t teach it, which not only did I love but I took a lot of pride in.  By now I would have been a full-blown scuba instructor, and would have been tapped by the shop to actually be a trip leader to exotic destinations.  That’s all gone now.  Hell I don’t even like leaving the house anymore because I don’t want to be that far from a bathroom.  My bucket list of going to Thailand, Indonesia, Egypt, etc?  It’s like it never even existed anymore, like it was some former life.  The thought terrifies me now.

My friends?  What few I had are mostly gone.  The scuba shop folks have all drifted away except for two that I have lunch with maybe once a month.  Amy and I are very good friends with a couple we met on a dive trip that we have dinner with once a month when I don’t have to cancel because of my health.  I see R. for lunch once a month or so, and my buddy L. at Wells Fargo that I met in my assistant instructor class.  That’s about it – most of our friends that we see are Amy’s friends, who have honestly been a hell of a lot more supportive than my own.  Occasionally I get a text or something from someone, but for the most part they’ve all passed me by.  That’s pretty common too with cancer, and although it’s hard not to I don’t hold it against them.  It’s tough to deal with and you definitely find out who your friends are.  L. and that couple friend visited us in Arizona, did you know that?  L. twice actually.  The rest?  A few emails prompted by an email Amy asked the owner of our dive shop to send to all the employees and silence ever since.  My phone rings so little anymore I rarely leave the ringer on.

My life?  I struggle to get up, go to work every day, yawn my way through the afternoon most days and come home after 5.  I try to bury all the energy deficiency problems enough to have fun with my daughter and stay awake through dinner, do her bath and get her ready for bed and read her a book.  I try to talk to my wife most nights, or help with the dishes, but by then I’m usually so tired it’s just easier to go into my home office and kick back in my chair.  I say goodnight to Amy and then stay up another hour or so, because it’s the only real guilt-free time I get during the day (i.e., my resting is not taking away from time with Amy or Ariana) and then after taking all of my pills go to bed and do it the next day.  I have nothing to look forward to in a real sense anymore – I just “do,” basically for those around me.  The bills have to be paid.  I have a mortgage.  Ariana needs clothes.  Etc.