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.

Weird.

Had an appointment with my GI doctor today, the one who originally ordered the tests that led to the discovery that I had multiple myeloma.  Was strange — he teared up at some points during our conversation, which is now the second time I’ve experienced that.  Much like my last impression when it happened with my original doctor at the Mayo Clinic, while it’s nice to know your doctor is so connected to you and your situation, it’s also somewhat of a confirmation that you’re pretty well fucked.

They are scheduling a colonoscopy next week.  I had something light up on the PET/CT scan that I did, and while nobody seems concerned (they had just done one a year ago and apparently things don’t happen that fast in your colon), I’d like to be reassured nothing is going wrong there if nothing else.  More importantly however my GI doctor believes since the Mayo Clinic requested it be done that they might not proceed with my transplant if it isn’t.  So one more thing to stress about, although given the fact that everything feels fine there (in fact better than usual, really, considering I was seeing him for recurring diverticulitis) I’m not too worried.

I am, however, utterly sick of doctors at this point.  Nothing against any of mine, I just don’t like medical stuff and I feel like my life is one big fucking doctor’s appointment.  I want to be normal again, to not have the weight of this nightmare constantly bending my back down like a backpack full of rocks.  I want to be happy, and feel what “carefree” is like again.  I don’t remember it anymore, don’t remember what it’s like to have nothing to stress about (much less a terminal disease).  I stare down the barrel of this every minute of every day now and it’s so hard to muster the strength to keep going, to keep telling myself to get through the day and the one tomorrow.  To convince myself I’ll have plenty of time with my daughter and to do the things I wanted to do in life.

Bad weekend.

As if I have many other kinds, lately.  I hate saying that, I hate this “woe is me shit” that seems to have consumed my life lately.  I’m at this stage now, if you can call it that, where it’s how I feel.  Last week the therapist mentioned again that people generally don’t progress linearly through the stages of grief / trauma, and I feel like I’m all over the place.

Back towards the end of the first week of my chemotherapy, presumably due to taking Levaquin for that fever, Dr. F. started me on Prilosec OTC when I started having abdominal pain.  That’s a 14-day pill regimen which according to the box you aren’t supposed to redo for 4 months without a doctor’s approval.  Unfortunately after cycling off it last week my stomach started bothering me again this weekend and I ended up calling Dr. F., who told me to get back on it and follow up with my GI guy (who said the same thing and said disregard the box instructions and just stay on it).

So yay, another fucking pill I get to take forever.  Took yesterday off to not have to deal with the stomach pain at work and to give myself a mental break.


On a not brighter note, while talking to my GI doctor I tried to schedule the colonoscopy the Mayo Clinic had ordered since I now have a month of chemotherapy under my belt (there was concern about doing too much too soon and drug interaction with results).  Unfortunately I had one last November, and my doctor’s assistant felt that this needed to be handled delicately because there was a good chance my insurance would not pay for a second one within a year’s time.  This even though something showed up on that CAT scan I had prior to hitting the Mayo Clinic.

Because really, I needed something else to be anxious over.  I had hoped to just get this dealt with and have one less thing to worry about, but it sounds like that’s questionable now.

Last week the therapist also mentioned (can’t remember if I wrote about this) that I might want to consider going on anti-depressants.  I have staunchly opposed those for my entire adult life on the basis that sometimes life is depressing and you grow emotionally by working through things.  But this isn’t a partner cheating on me or a divorce or something else depressing to “work through.”  I have cancer.  It is certainly within the realm of high probability, unless they magically cure this before it chews me up or something beats it to the punch, that I’m going to die from this.  As such I feel stuck in this groove on the record where it feels like the weight of having this is just dragging me down the fucking toilet.  No matter how I frame it, no matter how I spin it, I keep coming back to “I have cancer.”

I hate that, I hate that I feel like I need to now chemically alter my brain just to cope with all of this.  What the fuck happened to me, to my life?  And why?

Amy went down to the Springs with Ariana for a night and to do a much needed and deserved spa day.  While she was gone I worked on cleaning up the spare bedroom upstairs, which has become a repository for all of Ariana’s old clothing and stuff that we need to either donate, put on consignment or garage sale away.  That’s the only good thing about my chemotherapy, the steroids have me organizing the house on a daily basis.  Anyhow I’m laying out stacks of my daughter’s clothing and I just fucking broke down, totally.  I feel like I squandered her first year of life adjusting to being a parent instead of being a better one, feel like I could have done and been so much more for her — and now I’m facing the very real possibility that I won’t get to make that time up.  I realized, looking through all of those tiny dresses and infant hats, exactly how much I’d give to have a chance to do that over — but I won’t get that.

I know I’m being hard on myself and that I’ve done the best I can do.  I know I work harder every day to be her hero and to be a better father.  I just can’t get out of this mental place right now — it’s just all bad, everywhere I look.

Long week, but fingers crossed again.

A lot to get through and I’ve been bad about writing here this week, so apologies in advance for the long post.

Starting Tuesday night I got hit with an enormous amount of abdominal pain, about a 6/10 on the scale.  This lasted until about Thursday night and involved calls to my GI doctor, Dr. F, me starting Prilosec OTC, very little sleep, and me mentally spiraling downward into a place where I was actually Googling methods of committing suicide.

It feels weird to type that.  This all feels weird.  Four months ago I was a totally different person.  Then someone told me I had a terminal disease, even though I felt fine.  I had tests and was poked and prodded and sucked and cataloged and talked to and convinced that I have this thing, that it’s slowly but surely eating me away from the inside and eventually is probably going to kill me.

I’ve tried to maintain a positive attitude on things, usually via my typical black sense of humor.  It’s been almost impossible — I’m still in a horrified, “this can’t be happening” state of mind.  I was and still am grieving for myself, for the life I feel like I have lost.  I’m constantly wracked with guilt over the impact of this now and in the future for my family and friends, etc.  I started seeing a therapist knowing that I am not equipped to deal with trauma on this level, though, and although I couldn’t (and still can’t) summon hope and a “kick ass” demeanor quite yet I got as proactive as I could with my treatment.  I even got a bank safe deposit box and had a will made, put it all in there, and started writing letters to my not even 2-year-old daughter so in case I die from this she can at least have something from me to know who her father was.

And because it’s my only shot, apparently, and still not feeling bad whatsoever physically from this, I start chemotherapy, and WHAM.  Now I fucking feel like a cancer patient, or at least what I figure one feels like.  I get this brutal temperature and have to immediately start antibiotics, followed by a holiday trip to the ER.  I’m tormented constantly with thoughts that my body is rejecting the treatment, that my organs are failing, that I’ll have to switch drugs so one less method to battle this and that much less life I get.

The temperature goes away, I have a day of peace, and WHAM.  The stomach thing.

Chronic pain, and the thoughts that accompany it, have a way of putting things in a frightening perspective that I could never have come close to understanding before experiencing it firsthand.  Is my stomach, which has troubled me for years, finally falling apart in the face of the chemotherapy drugs?  Why won’t the pain go away?  Is there another cancer in there, the highlights the doctors wanted me to follow up on after chemo started but assured me was probably nothing?

Sitting on the couch, in dull agony, sleepless, far beyond any internal coping mechanisms and feeling a *click* in your head that says “fuck this, I am not spending the rest of my life dealing with this,” the tension in the house so thick you can taste it’s metallic taint in every sip of water (which you’re afraid to drink too much of because of the stomach pain, but have to drink a ton anyways because with the drugs you’re on your kidneys can easily fail if you don’t).  Stressed because Ariana hasn’t slept all week and you feel like this is seeping into her, that she keeps hugging you and saying “daddy hurt” and it breaks your fucking heart because now my pain is fucking her up as well and the guilt is overwhelming.  Realizing if this is what life is going to be like now that you have life insurance, and a will, and you can make everyone’s life easier right now.

Sitting on the couch, thinking these thoughts, wondering if there’s enough prescription painkillers and muscle relaxants in the house to do the trick, wondering if you have the courage to go downstairs, load up a rifle and pull the trigger.  Wondering if you could get through Cabelas to pick up a cheap shotgun and a small box of shells, how you’d contain the mess to contain the trauma, etc.

That’s a place I’ve never been before, not in a real sense.  I mean I think everyone ponders this stuff at some point, but to really start building a decision tree, to see the squares mentally and the lines and arrows between them, to tickle the edge of a plan …

My therapist and I met Friday morning, and after I related this all to her she asked me what pulled me back from the edge of the abyss I was standing on.  I told her it was a combination of things, most of which I read that night on my phone in tears with my daughter and wife oblivious in the kitchen next to me.  Things like:

Or maybe by not killing yourself, you save a number of people you know the sort of unbelievable heartache that is 100 times worse than whatever you are feeling now? Is that alone enough reason? You might be thinking that those near to you will come to terms with what you are about to do; that your pain is much worse than theirs will be. But the legacy you leave those people is not only the grief of your death, but guilt for the rest of their lives that they couldn’t help you feel better. They will feel responsible. Or else hurt, confused, angry or remorseful.

 

Make no mistake. Suicide will have a devastating effect on those around you, and the effects will stay with them the rest of their lives.

Oddly enough that is from a website devoted to how to kill yourself.

Anyways, I tucked the suicide prevention hotline number in my phone, thought through things, and decided that this is NOT MY FAULT.  It’d be one thing if I had been out banging hookers on the side or shooting heroin and had contracted AIDS or something — but I didn’t do this.  It was done to me, either by someone’s God or the shittiest roll of the dice I could get one day or who knows the fuck why else, and although I doubt I will be able to ever not feel guilty over it’s impact on those I love, I will not leave them a legacy that they might have failed me (even if that couldn’t be further from the truth).

Plus my mother would blame my wife and probably sue her.  That’s a whole different Oprah, however.

Sorry if this is all TMI … this blog is the reality of me and my fight with this, and it’s not all bravery and courage and bravado and “fuck this disease.”  I’m just not there, man.  I try.  A lot of people I talk to think I’m there, which means I project it if nothing else.  But I’m not there.  I’ve had thrust upon me that not only am I mortal (very much so, apparently) but I’m flawed, and weak at times.  I barely recognize who I was four months ago before I found out about this, and when I do I just get angry because I was on such a good path on almost every level and I feel like this is my fucking reward.  But even that image is fading, getting too distant in the rear view of my life now.

But maybe courage is not so much not being afraid as it is being scared to death and doing something anyways.  Because I want to try to be there for my wife, and be a better husband.  Because I want to have a relationship with my daughter.  I want to live, you know.  Not with cancer, obviously.  But I want to live.

Anyways, just in case that was not all enough, Friday was a total shit show at RMCC for me.  The day already started out badly with Amy and I getting into it that morning and then us both going to my therapist.  Although that ended well it set an emotional tone for the day and eroded the walls a bit.

We had an hour to kill so we hit up my favorite coffee shop, where Amy learned thanks to an accidental Edward Snowden -esque barrista that I had been going there and getting the frozen bear drink Amy had asked me months ago to stop getting (due to chemical content of the syrup).  I have actually cut those out for the most part but I consider it my mental health drink for the soul at times and have snuck in a few, yes.  Needless to say she was pissed, and while I was able to fix it (I really had no idea she’d be angry, since she’s let us cheat on the anti-cancer diet rarely for a desert, etc.) when we got to RMCC we were primed for disaster.

Sure enough we got a temp nurse who had no idea what we needed to be doing, had zero personality, was rude and impersonal, couldn’t understand my orders and then got Amy in trouble by letting her go with me into the blood draw room (a no-no at the Sky Ridge location, apparently).  At this point I took over with another nurse while Amy had a meltdown outside the door.  By the time we got into the infusion room to wait for my blood test results (they test my CBC levels before administering the Velcade) we had the manager of the location sitting with us and apologizing profusely as Amy related our experience, then the head of all of their nurses, etc.  It was insane, and kind of embarrassing, but Jesus — temp or not, if you are working with cancer patients then (a) have a clue what you’re doing, this stuff is dangerous to get wrong, and (b) have some fucking empathy.

I don’t want to badmouth RMCC here — they were amazing about it, and I get it.  I know a ton of nurses and I know how the nurse-for-hire game works.  Sometimes you strike gold, sometimes you get coal just like non-nursing temps.  So I didn’t take it as an example of their quality or anything, I was just in shock — it’s a delicate thing, dealing with this, and dealing with such potent emotions and pharmaceuticals, and until someone told us I had no idea that was a temp who didn’t actually work there.  You kind of want your care to be the one thing you DON’T have to worry about dealing with, you know?  So not their fault, and the nurse who took over my care in the infusion room was awesome just like everyone at RMCC usually is.

Tough stuff, but there is a silver lining … two actually.  One, Amy and I spent a lot of time talking the rest of the day and using the therapist visit as a launching point to fix some things.  This is just as hard for her as it is for me, and it’s a learning process that we both have to go through.  Understanding that is part of it, and hopefully it will bring us closer together.  We talked more about “us” than we have in a long time, and that’s a good thing.

Secondly, so far so good on the feeling OK front.  I have a feeling, given the side effects I was dealing with this week, that most of my problems were caused by the Zoledronic acid I have to get infused with once a month as well as the Levaquin I had to take due to the temperature spike (bad on your stomach, apparently).  I feel OK today, outside of being a bit hyper and tense (probably due to the enormous amount of the Dexamethasone steroid I take on Fridays).  No temperature, I slept well, and fatigue isn’t too too bad.  If I’m right the even better news is I’ve had several nurses tell me usually the first Zoledronic acid dose is the worst, so hopefully we won’t be experiencing this again.  I’m also sticking with the Prilosec for another week or so as well as something else for my tummy to keep it feeling good and to be proactive about things.

That’s about it for this week … and I think that’s enough, Jesus!  Had one tough moment this morning — we came home from our daughter’s swimming class and Amy’s best friend had dropped off a huge box for me.  It was a gift package put together by the founder of It Ain’t Chemo, Kevin Hoyt, with a blanket, several tshirts, a backpack, a hat, hand sanitizer, a wristband, pens, etc. and his personal contact information as well.  It was hard reading the letter, having the reality of this all slap me in the face — reality does that often, lately.  And it’s hard being the recipient of things like this — it’s hard for me, for whatever reason, to realize how much some people care, and Amy’s friend Julie and her family are truly beautiful people and I don’t know how to thank people for things like this, or for the anonymous friends who have coordinated to leave a gift basket for us every day on our doorstep.

I’ll have to check out this organization and make sure to thank and donate to them … I haven’t had any contact with others with cancer since this started, on a personal level, and maybe this is a start.

Anyways fingers crossed for a good week.

Slightly more ‘hurry up and wait.’

Talked to the local oncologist’s assistant here and have an appointment Thursday afternoon to get things rolling with the chemotherapy.  A little nervous about how that will go but fingers crossed — I’m at a pretty high stress level and it would be nice if something would go my way with all of this right now.  Unfortunately my original hope, which is to be able to do my weekly chemotherapy treatments at their Sky Ridge location but keep him as my local doctor, sounds like it’s a no-go.

Still going to push for it since a weekly trip to Rose is a good 1.5 hour round-trip commute at best, while Sky Ridge is 20 minutes round-trip.  Seeing as how I’m having a doctor at the Mayo Clinic direct my care anyways I’m not sure what the benefits of just finding a doctor at their Sky Ridge location is … I guess Rocky Mountain Cancer Center isn’t a group the way I thought it was, but we’ll see.

Meeting a therapist to work through the emotional and mental issues related to all of this Friday, waiting to have a endoscopy scheduled with my GI guy to rule out some things they saw on the CAT scan that the oncologists want checked out.

Through all of this I actually feel really good (most likely a function of a vastly cleaner diet for the past 4-5 months), which makes this all so hard to swallow.  I’m on the precipice of embarking on a very scary, very serious road and I don’t feel the slightest bit sick.  Kind of broke down for a moment on the couch last night talking about this with Amy … there we are, sitting and having dinner on the couch and watching some Food Network show similar to our usual routine for quite a while, except it’s all different now because the sense of normalcy is just an illusion, is just us pretending for a moment that this isn’t all happening.

Makes it hard to enjoy even a peaceful moment.