Hold the tomato.

I was watching “Everest” the other night, an old IMAX documentary on a crew that summited during the disastrous 1996 season, and an image stuck in my head of the climbers taking those last plodding steps to the summit. Although I have no desire to ever do something like that I’ve watched enough docs and interviews with climbers to know that at that point it’s more about human will and less about conditioning or technical ability … just a personal struggle to take the next step when everything in the universe is screaming at you to turn around and your body is actually dying due to the lack of oxygen above 26,000 feet.  One more step. Then another. Then another.

I feel something similar in that reason and hope have fled the building and now I just go through the motions trying not to think, trying to take the next step and then the next through the side effects and the test results and the promise of nothing but more of the same, or worse, to come. But that last week in the hospital really beat me up not just physically but mentally and emotionally as well, and I still feel off-balance because of it.  Something has changed, and not for the better and I’m now focusing on each step to the detriment of the journey itself, which I find myself constantly questioning now.

First let me say I don’t feel good.  I would have updated sooner but as some of you reading this know the effects (side) of chemotherapy is cumulative. The last cycle sucked, but this one?  Jesus.  VTD-PACE week went fine, or as fine as getting six different chemos at once while being isolated in a hospital can go. I’ve found with the frequent cancer-related transformations of the horrific into the commonplace comes a difficulty in not thinking about what’s going on. As I’ve written before I tend to survive in a state where I just meander through life’s turns and try not to think too far ahead to maintain my sanity. When you are alone in a hospital in the midst of 96 hours of chemotherapy, however, that becomes impossible. It waits for you around the next corner on your nightly walk in circles around the unit, always ready with the same question when you least expect it.

How the fuck did I get here?

I kept asking myself unanswerable questions like this, over and over and over again until it became some odd soundtrack in my life that I couldn’t turn off. It’s like the cancerous version of being trolled with Rick Astley.

I had … a life. I’m convinced, the more I look back on it (a standard practice for the Doomed) that I’ve monumentally squandered it at key points, but I can’t fix that now — the uselessness of rear-view mirror epiphanies, right? And for the past four-ish years I’ve dealt with this diagnosis at somewhat of an arm’s length. Knowing, processing, but not BELIEVING. Huge difference as it turns out.

Is this it?

I feel like I’m dying, in earnest.  It’s all so tiring. Soul-tiring. This meat popsicle I’m wearing has had about as much as I can dole out, I think. Everything hurts, or tingles, or feels numb. Thanks to the massive amount of steroids I can’t shake a cold I entered the hospital with which isn’t helping either, but this is a tired that goes to the bone and beyond (ironically, being that I have Myeloma).  It’s been a hell of a battle so far but not only do I not feel right now that I’m winning, I feel that I’m accelerating losing. And when I stare down the barrel at possibly doing one more cycle of this and then something even more hardcore like another stem cell transplant right after, then CAR-T, then God knows what’s next, I feel less like a human and more just like a science experiment or a cautionary tale about karma and random chance.

If I’m honest I’m just not sure I have much more left to fight this, and as the treatments become more intense I’m not sure what the fucking point is either. When does it end?  Quality of life went out the window a long time ago, and given current debates I wonder if I’m just another drag on the system, the thin edge of a bell curve that needs to be snipped off by statistical certainty to make the credits and debits columns balance again.  I get that I’m fighting to spend more time with my daughter but even she knows something is badly off the rails at this point.  I love that kiddo fiercely but I just am not sure I’m equipped to keep fighting just for her. I hate that admission but there it is — I’m just human. Less than human right now, or at least it feels that way.

Everything feels “off” to me — I’m not even sure how to describe the feeling, but as an example I’ve had to sit myself down to do reality checks on whether I’m even here anymore. How weird is that? I feel like a ghost in my own life right now, isolated, interacting but not being interacted with, observing but not participating, loving but unloved. Everything feels tiring and holds no interest for me; it’s like a dam burst and the sickness, all of it, has poured out and tainted everything in my life suddenly. It all tastes sour now.

What’s more I’m really feeling like an inconvenience.  That’s one of the gifts a terminal disease gives you that people don’t really talk a lot about. Sure, people who don’t know their ass from a hole in the ground write pretty pieces about how when one of us gets cancer we all get it and blah blah blah, but when’s the last time you read about what it’s like to be that person in the middle? I’ve done the group thing and seen the looks the Doomed give their caregivers — it’s not puppies and sunshine. It’s furtive glances filled with crippling fear, monumental guilt, and horror at what our disease has wrought both to us but also AROUND us, the collateral damage of something we couldn’t control that has gone south in ways we couldn’t have possibly predicted.

Then again part of that may be just me projecting. I’ve led a mostly pragmatic, passion-less life, so should I be surprised at the end when the pragmatism of those around me is reflected back at me?  Dunno. Shit I would just like a hug occasionally or the right question.

On that note, however, several friends visited me in the hospital which was a welcome surprise, especially when my own family didn’t.  I’m not used to that but it meant the world to me and I didn’t want to come across here as not appreciating every second of their taking time to spend with me.  “Thanks” doesn’t cut it, but thanks all the same.

I’ve spent four years watching death come for me at five fucking miles an hour and now it’s filling the rear-view mirror. What’s more it’s apparently forcing introspection and analysis of my life I’m just not prepared to do, a pre-St. Peter at the Gates review that is leaving me feeling empty and meaningless as a human being. I’m trying to come to grips with who I am in the waning moments of life and finding the emptiness I knew was there, trying to reconcile who I am/was with what I wish I was/had been and finding it all wanting.

It’s a little too much.

So yeah, feeling a bit defeated right now, beaten down and left in a ditch with no clear path back into the sunlight. So I take more plodding steps towards a summit I no longer, if I really ever did, believe exists, and now I’m questioning whether it’s worth it.  I guess I find out Friday when I see preliminary results on my numbers and meet with my oncologist. Another step. And another after that, whatever it will be.

Incoming pithiness to irrelevance transition … on the bright side I did find a really good hot dog place to order from when I’m hospitalized, so there’s that. Even the nurses were jealous of the smell. Probably not so much of my breath the rest of the day thanks to the onions, but I’m sure they’ve smelled worse in a cancer ward.

Sometimes life just needs a good Chicago dog (hold the tomato) with a side of fries.

Round two, day two.

Welcome to the second day of VTD-PACE, round 2. Tried to write yesterday but just wasn’t happening.

Obviously hoping for good results this time as well. If I could limit this to two cycles that’d be ideal, although if working well a third makes sense. I would like a break from this, however — the side effects last right up until the next cycle so my quality of life never really rebounds.  On the bright side, Megan (PA from CBCI) seems to have solved my upper GI issues by doubling my Prilosec prescription (the OTC is 10, I think? I’m at 40 now) and giving me a cocktail of Maalox laced with Lidocaine. Only taken that 1-2 times (the cocktail) but I have no more GI issues, so yay!

Also doing a third cycle puts off the stem cell transplant.  I don’t mind a transplant per se but living in the hospital for almost a month sucks.  Bigtime.  Doing it close to home seems like it’d almost be worse if that makes sense as well — knowing that just outside your window is your life but you can’t access it like some short-term prisoner?  Blech.

Need to investigate edibles as well before then, because, um, yeah. BORED.

Of course the other side effect that I was waiting for has arrived, the loss of my hair.  It started falling out this past Friday (on a black shirt day, of course). Typically it only fell out of the center of my head, making me look like a cross between a poster child for male pattern baldness and Johnny Depp in that flick he did about Whitey Bulger. Anyways, here’s the obligatory cancer cue ball picture:

Looks about the same to me but then again I was already shaving my head with a #1. Quite the head tan line now though.

So far so good on the treatment side.  Had a pizza last night, Fat Sully’s of course, to “celebrate” the new cycle starting (food for the soul) and took an Ambien to get some sleep — I remembered having problems getting to sleep last time so I asked my docs to put Ambien on my list so I could get one easily if needed. Really wish I had access to some of my more non-traditional sleep methods but somehow I don’t see that flying here. Other than that it’s been just resting, walking or messing around on the laptop as usual.

I feel … safe. It was a good idea to do this in-patient.  My nurse today, Kellie, is one I know from previous visits and has that professional yet outgoing manner to her that makes you confident you are in good hands.  The irony is that my anxiety has been relatively high lately, but here I am now in the hospital pretty relaxed.  I miss being home, though, and miss my daughter terribly. I got some pictures today of her and her friends from my wife — for some reason Amy gave them the hose, which they then proceeded to mud up three dirt patches near the playset and roll in it like little piggies.  I’m guessing the mother of the twins Amy was watching were not amused, heh:

I’m still baffled they took their shoes off.

Anywho, not much to report here but figured I should stay in touch and keep things updated. My buddy Lance came by on his lunch today which was awesome — it’s hard doing this alone all the time, so a friendly face is definitely welcome.  Need to put together a dinner with him and another buddy of mine as promised but just have not been willing or able to plan anything lately.  Should fix0r that sooner than later. Also need to remember to order cupcakes for the nurses here (found a place that delivers, dangerous) when that charge nurse from last visit is on shift.

The future has nothing to do with you.

Coming off a full-day stint at the hospital getting two units of blood yesterday and mentally preparing for VTD-PACE round two.  I’m at work, so I suppose given that measure of wellness I’m OK.  My mind is mush, however.

What do you think about when you’re hooked up to the IV? I try not to think at all, but reality creeps in when I’m not 100% distracted.  Have I had too many transfusions? Is this sustainable?

And how did I get here?

Even for those who have had cancer ruin someone close to them I think it’s hard to fully understand the struggle of living like this. As a lung cancer blogger I follow recently noted,

… there is no post to our traumatic stress. It is ongoing, or OTSD.

We focus on staying alive even as we worry–constantly–about dying. And, because we often don’t look as if we are ill, it is very, very difficult for those around us to fathom what it’s like to live on borrowed time.

Can you plan a vacation six months from now? Is it worth spending the money to get your dental work done? Will you be there when your kids graduate from high school?

As a society there is a great deal of emphasis on planning for the future. When you are living with cancer, it often feels as if the future has nothing to do with you.

So well put it’s almost criminal.

I’ve been feeling the sheer WEIGHT of it all lately. The frequent transfusions, the “this better work or rut-ro, Shaggy” chemotherapy (VTD-PACE), an upper GI problem we’ve been trying to nail down, the “fatigue” combo of the chemo drugs + Myeloma + low hemoglobin, yada yada yada.  It all has seemingly teamed up to test my mental and emotional fortitude. I’m not even sure how to describe it except that I imagine it’s similar to being in prison for life — you have to adjust. THIS is the definition of your life now, the new normal.  The anxiety of the next blood test, the realization of how precarious your life is and how sick you really are, the never-ending doctor appointments, mountains of prescriptions, etc.

It’s a lot to take in, and sometimes it feels like I’m carrying a second me on my back. I think I’ve used the analogy before but at times it’s like being in a snowglobe that someone (God?) just shook up for no obvious reason.

Life going OK, Rich?  Here!

*shake-a shake-a shake-a*

Now try it.

I go back into the hospital on Monday for VTD-PACE round two.  I’m a lot less nervous this time given how the last cycle went, but I can’t help but whisper a quiet “WHAT THE FUCKING FUCK?” to myself in the late hours of the night when the silence of the wife and daughter sleeping and the muted crackle of what I’m inhaling is my only company.  My mind transcends, giving me a perspective that is at once both intriguing and depressing. Questions flutter through my mind, epiphanies coming in such rapid succession that it’s hard to grab a hold of just one for too long.

How many have sat where I sit, wishing for a cure but knowing every single person who’s ever had cancer has wished the same? How’d that work out for them?

How much longer can I do this, really?

Is it wrong to wish sometimes that the cancer would just fucking win and I could be done with all of this?

Where the fuck are the Korean BBQ potato chips?

I think the transfusion thing is messing with me lately. My wife, my parents and even I have started questioning how sustainable this is when I’m needing weekly red blood cell units just to survive.  To SURVIVE.  That’s a little hardcore, but it’s the truth.  The simple reality is that my disease reached a point this year where it was either “kill it with fire” or, most likely, start dying in earnest. As a result these things, this chemo, the blood, etc., are needed.  Weekly doctor visits that turn into all-day transfusions, monthly IViG infusions, Zometa infusions, the daily cabinet-worth of prescriptions. Sacrificing, in various ways, the future for the present just to have a chance to experience that future.

Sorry, I’m probably supposed to paint a rosier picture of being Doomed, aren’t I?

Snicker.

I’m not in a terrible mood, really. I’m unhappy, for sure, but who the fuck is happy about having cancer? OK I know some people play the “cancer has improved my life” card, but that’s a minority in my experience. It’s not something you can just ignore unless you willfully ignore it.  It’s always there, tainting everything it can get its insidious little claws on. It forces constant reflection, questioning, fuels bizarre and dangerous at times thoughts.

I flip through my Twitter feed at least once a day, noting what’s on everyone’s mind in this horrible little world. One theme that comes up a lot is whether or not it’s OK to use combat-related terms to describe having cancer. The objection, if you couldn’t figure it out, comes from when someone inevitably dies from this — nobody wants to think of those folks as “losers,” you know?  But it is a battle, for every fucking inch. Physically, mentally, emotionally, daily. That’s the part that I don’t feel equipped to describe, at least with simple words on a screen.

How do you do it every day knowing there’s no end in sight, no relief coming?

How do you get up every day knowing that and function as a “normal” person, a father, a worker drone, a human being?  What do you do when something takes away your future and writes you a new (and horrible) one?

I dunno.  So far I just fight.  I take it day by day, as I’ve learned through going through this, but you can’t stop not thinking about the future forever. And right now mine is 1-2 more in-patient cycles of VTD-PACE followed most like by a stem cell transplant and then … I dunno.  Neither do my doctors.

As a result I’ve become what I call a pocket hedonist.  I take pleasure when I can and where I can, no longer caring (within reason) who thinks what about it.  Yesterday, for example, I ordered a pizza from Fat Sully’s and got a 20″ for the nurses in the infusion center as well.  I enjoy doing things like that.  I write here, although on days like today I wonder who I really could be helping by putting this bile to paper besides myself.

I think this is the death of hope. It feels like that.  The odd thing is in its absence I simply feel like an automaton going through the motions instead of someone crushed with despair.  I’m tired of hope.  It’s exhausting, the cycle of hope – disappointment – hope, and I’m tired the minute I wake up every day these days. I’d rather just be me, although I wonder if I’ve permanently lost who that is in all of this.

Instead, I simply DO. I no longer feel the need to ascribe my actions to something that keeps letting me down. I take stock every day of what I’m capable of and I just focus on continuous motion.

Is that wrong?  Am I doing cancer wrong?  Inquiring minds want to know!

In the meantime, I’ll just be moseying along and trying not to think.

 

 

 

Insert title here.

Got a few things to get into today, so let’s get to it.

First, the good news.  Although premature, I have my first results from the VTD-PACE “kill it with fire” chemotherapy, and it looks like it’s actually working!  My oncologist is stoked (his exact word), in fact:

  • M-Spike down to 3.1 from 3.9
  • IgG down to 4,718 from 5,363
  • Kappa down to 575 from 1,314

The down-from’s are late April and May #’s. Given that the latest numbers should lag treatment by about two weeks, according to my oncologist team, that’s a big deal that they are dropping so rapidly already. It’s even a bigger positive given that I tolerated the treatment at, as the nurse practitioner said, a 9.5 out of 10 — basically breezing through it. Doesn’t feel like that, but I know it could be much worse. Outside of reactions to the drugs my biggest problems have been low blood counts (which are currently rebounding, finally), exhaustion and nausea.

So yay me.

I am having one problem that hopefully we addressed yesterday. Ever since treatment started I’ve had this weird nausea and upper stomach area pain where it hits instantly when I crunch my stomach forward — how to explain this, hmm.  Like when you are sitting down and lean forward on a table or desk? I get instantly sick to my stomach to the point where I could easily throw up.  I have a prescription for a new med to take which I’ve conveniently forgotten the name of and we’re doubling the Omeprazole dosage I already take for chemo-related GI stuff (I think it’s the steroids that cause that but who knows).  Hoping this new regimen works because I’m at a desk either working or playing for most of my waking hours.

The next cycle of VTD-PACE begins on the 19th. After discussing it with Megan (the NP) and my wife I’m going to do it in-patient again. The oncology team doesn’t care either way, but since I don’t mind the hospital it just seems safer to me. I think I walk around partially dehydrated most days and I’m concerned that doing this treatment outpatient, besides just being a pain in the ass given how far I live from the clinic, might put me in danger of the things they watch out for in the hospital (including some nastiness if you are dehydrated, apparently). I also have no easy way of getting down there if, for example, I need a 4 am transfusion and I’m at home.

OK so I’m only doing it in-patient because I can order ramen and Fat Sully’s pizza.  Shhhh.

BTW I’m currently in the process of putting together a long-overdue Excel spreadsheet showing my #’s for the past four years combined with what treatments I was on and when.  I’ll publish them here when I’m done — just waiting for some data from my current oncologist.  Plus I need to launch an archaeological mission under my desk to find all of my lab result paperwork from the first year of having this disease. I’ll wear a cool hat and bring a bullwhip. And if history’s any guide I’ll smash my head into the bottom of my desk as usual and curse like a sailor.

Next up, ASCO. Although ASCO is, according to my oncologists, usually more targeted at the big four cancers, there were two huge announcements regarding CAR-T successes from this last one.  First, Nanjing Legend Biotech announced startling results from an early stage trial of their anti-BCMA CAR-T cell drug, LCAR-B38M. Thirty-three out of 35 patients (94%) went into remission with an objective response rate of 100% — crazy stuff.  As my oncologist and several others on Twitter I’ve read have noted, however, Chinese trial results need to be taken with a grain of salt.

Closer to home, Bluebird Bio and Celgene announced amazing results about THEIR anti-BCMA CAR-T therapy, BB2121.  In a clinical trial of patients no longer responsive to a prior stem cell transplant and a median of seven prior therapies, the 15 patients (out of 18) that received the highest doses had some great response rates. Twenty-seven percent achieved a complete response, 47% achieved a very good partial response and the remaining four patients were in partial response.

As noted before my oncologist’s plan is to do 1-2 more VTD-PACE cycles followed by a stem cell transplant (my second) and then a CAR-T clinical trial, so it’s really encouraging to see this.  I also learned a tiny bit more about CAR-T trials this week — if I have to travel for one, for example, I need to plan on about a month.  Basically the process is similar in protocol to a stem cell transplant as I understand it — while your blood is shipped out to have whatever voodoo magic done to it that they do, you are in the hospital doing chemo to prepare to receive it back and then watched like a hawk.

But that’s a problem for another day.

Alright, time to dip into the jar o’ pithiness. Was twisted pretty good the other night and managed to write down one of the many epiphanies I have on nights like that. Here’s what I woke up to find:

Every day I’m around is one day older the little girl crying and screaming “I want my daddy” is in my nightmares about my death from cancer and how it will impact her life.  If I had to distill why I can’t think about my future without breaking down, it’s that.  That’s it, the entirety.  I feel like no matter what I do I cannot NOT cause her pain.  Does that make sense?

And yes, I do have the skill to make an entire room go from normal to awkward in one paragraph — why do you ask? Snicker.

Ariana (my daughter) has been on my mind a lot lately — with all of her activities plus the week-long hospitalizations and “salvage” chemos these days it’s hard not to. She just graduated from preschool, which was adorable. At her pre-kindergarten orientation they gave her a t-shirt that claimed “Class of 2030.” Crazy. She’s also in a new phase where she wants to help with everything I’m doing now, which I need to remember to encourage as much as possible.

Problem is, and this is unavoidable, it obviously brings up hard emotions as well. You have to understand my mindset.  For example there’s a new video game coming out in November that I skipped pre-ordering because my first mental instinct was to ask if I’ll even be around this November … pretty sure I will be but this is how I see the future beyond a few days out. I want to be here in 2030 to see her graduate, God damnit. I want to teach her to drive, be her best friend when she has bad days in school, and help teach her algebra.  I want to make her feel better about having to have braces, and share with her my favorite music and movies.  I want to take drum lessons with her, and most of all go on dive vacations with her.

Lately we’ve been doing duets of Disney tunes, mostly the Moana song “How Far I’ll Go.” She sings it all the time so I learned it on guitar the other night so we can play together. I love this but it breaks my heart too, you know?  Maybe she becomes a famous singer someday — but I won’t be here to see it, most likely.  That’s the problem with cancer.

Oh and yes I know there’s a 4-year-old and her daddy who’ve become internet-famous doing this, BTW. Ariana sings better than that girl and I seriously doubt her dad has anywhere near the Iron Maiden collection I have, so screw them and their infinite cuteness and talent.

Seriously, though, I just hope she remembers those nights we sat on the couch and how I smiled at her, you know? Maybe someday she’ll understand that smile and the tears that I was trying to hide.

All the good in my life, the things I truly care about, always have a “but …” tacked on the end. I know in some ways it keeps me grounded but it’s too much — it taints everything, gives it all a metallic aftertaste.  Thanks rare cancer! So yeah … every day I get is one more day closer to my goals (experiencing her life with her) and one day older and more capable, at least in my mind, she is of dealing with the aftermath should I pass away from this fucking disaster.

I really need to start writing down more of what I think about in the wee hours of the night when I’m happily medicated. I hate waking up and knowing I came up with some new Earth-shattering thought but forgot what it was.

Lastly, and so as not to end on a total bummer, I’ve decided that regardless of my blood counts I want to go diving again. Not tomorrow, but perhaps after the stem cell transplant I’m going to reassess where I’m at and see if my doctor will prescribe antibiotics and anti-fungals prophylactically so I can safely do so.  I’m in dire need of not only a vacation but the feeling of diving again — I can’t take it anymore. I want to float, weightless, without beeps and rings and doctor visits and text messages and chemotherapy and the rest of this turned-south always connected never-good-news life I’m trodding through.

Going into the usual Social Media blackout for the weekend, so have fun and see you on the flip side.  Next doctor’s appointment is next Wednesday so I’d imagine I’ll be writing something around then-ish.