Mental Sewage.

Another day passes.

I was supposed to begin the second cycle of my current chemotherapy today (Cytoxin, Carfilzomib and Prednisone) but I’m so beat up that Dr. Matous is giving me a week off.  We’ll find out mid-week how effective the first cycle has been.

I’ve been withdrawn, well, really in a lot of ways since I got the bad news about my CAR T results from Nashville.  I hadn’t realized quite how much hope I had put into that whole deal until it came crashing down. I know I’ve harped on it here a few times but I keep coming back to it, the day hope died for me. Now I just feel like I’m a one-person time-bomb who can’t see the timer. Place your bets, kids, there’s plenty of squares left.

I set little goals for myself, morbid as they are. I had to live through a week ago because I closed on a refi that completely got my family out of debt, so there won’t be any hijinks when I’m gone. I have to live through the 5th of September because I redid my will and all of the trusts I just set up for my family need to be signed for. There’s more, a mental list, but I’ll be honest — they don’t go too far out. I feel too fragile for that and certainly that has played into a despair I can’t shake.

I’ve only slept well in the last month the last two nights thanks to taking 50mg of Benadryl  at night (with a Xanax chaser and a toke or two some nights). Probably not the smartest chemical diet but there’s this weird place you get when you’re terminal where safety just gets put aside. Seat belt? Laugh. The only reason I wear one anymore is because the beeping annoys the shit out of me. Mixing Opiods (Opiates? Whatever, screw your accuracy)  and Xanax and pot? Well, maybe one of them will knock me the fuck out so I can stop thinking and get 4 hours of sleep. Yes how terrible it would be if I didn’t wake up and cheated cancer of slowly eating me alive for another unspecified period. Or hell, just so I could GET to sleep and shut my goddamn brain off for 10 seconds.

SO I CAN STOP THINKING GOD DAMNIT.  CAN’T YOU UNDERSTAND?

My brain is my worst enemy. Sure the cancer’s killing me but my brain is running the Howard Cosell constantly (not with his accent, but you know what I mean). It’s ruined me, and really THAT is the battle with cancer that I’ve lost. I mean you get cancer and you’re fucked, we all know that. At some point you’re just going to lose, odds-wise. But what makes is truly miserable are those voices in your head. My personal favorite is the constantly-repeating image of my daughter screaming “I want my daddy!” after I’m gone. Over and over and over and OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER … get the point yet?

I don’t know how to put that aside. Over five years of this disease slowly sapping away my life, my sanity, my personality. It’s not really how I wanted to be remembered, a shell of a human, but it seems like a one-track destination. I’m zombie’ing days away just trying to live another day.

And for what?

Well, for who, you know that Rich. But at what point do you become the albatross you used to write about? To everyone, to everything you know?

I feel like her defender lately, as if I suddenly understand her better. We’ve built this bond recently. Of course that can be a double-edged sword.  I asked my daughter last night why she told her mother she didn’t want to go for a walk with her and she told me “because mommy didn’t break her spine, or spend all that time in the hospital, and I didn’t want you to be lonely.”

If she saw the tears she didn’t say anything. I’m so glad I got cancer so I could have moments like that with my child.

Anyhow her mother is frustrated with her and a little short-tempered lately. Ariana is in a “phase” I guess. That’s one of the other fun problems with cancer the pamphlets don’t tell you about, kids. See our daughter’s therapist believes some of her acting out comes from my illness. So I get to see, firsthand, how I’m fucking my own kid up. I can’t tell you how awesome that is. Even though I know some of it is in fact just a phase.

But she and I are closer lately, anyways. Mostly because  I sneak her Blow Pops that I order on Amazon and hide in my desk. What the hell do I care? At least she can remember a daddy that broke the rules when her mother was gone to share a sucker with, I guess. I’m fighting for the inches now, praying she’ll remember this or that, or not this or that as the case may be. It figures that the exhaustion from the drugs and disease is so strong, so that I can’t even fully  enjoy these last moments. Not with dad, the gimp. He can’t feel his feet anymore or get out of bed half the time. Quite the epitaph.

Ironically my weight is at a nice spot now, although between the fact that I shave my head and the gaunt look to my face lately I feel like a double in Schindler’s List. I just don’t feel hungry anymore, except for the frozen fruit I take to bed at night as a snack. It scares me sometimes because I know I can’t heal without sustenance, but I just don’t want anything. Hell I’m taking a Zofran a day right now just to combat nausea, the last thing I want to do is eat.

So none of my clothes fit and I look like an idiot now. *thumbs up* I can’t even wear stuff I wore on my honeymoon without a belt, which is impressive (and shows you how often I throw shit away, since those haven’t fit, since, well, the honeymoon). On the bright side I can take my pants off without unbuttoning them. On the not-so-bright side if I don’t cinch my belt tight enough they do that when I’m walking into my office building.

Maybe I’m just pissed because I’ll be dead before Cyberpunk 2077 comes out. You never know with me.

Screw “hope.”

How’s that for a title to set the tone?

I’m not that anti-hope, really.  It’s just … man everything is making me tear up today, and I’m fighting off a serious depression which I always find awkward. Hiding the sniffles and pretending it’s allergies or just “nothing.” Trying not to think about anything remotely sad (impossible for me, since even kindness makes me sad on days like this). Work is kind of a shitty place to just have tears start rolling down your cheeks.

Been like this off and on for a few days now. I don’t think it’s so much drug-related as just a hardcore realization of where I’m at in life, where I’m going, and how much it all sucks. I guess better this way at the start of a new chemo regimen than all hopeful just to subsequently get emotionally crushed like a bug like I did by that clinical trial though, eh?

Started up a new chemotherapy this week — Carfilzomib, Cytoxan and Prednisone (I refused the Dex so we substituted that). I can already feel it in terms of fatigue; the last two nights I have gone to bed pretty early and slept great, but can’t get up. After five years of this you start noticing little things about your body a lot more than I think normals (those of you without cancer) do. There’s something different keeping me from waking up in the last two days, I can just tell.

My shoulders are still a hot mess — I don’t see any way around getting some x-rays or something done as they hurt constantly and my range of motion is severely shortened. Feet are still numb, and I’ve noticed on our nightly walks that if I walk too far the numbness starts creeping up my legs until I feel like I’m going to fall down. My knees and hips feel extremely weak at that point too. In the hopes that this has more to do with not getting a ton of exercise or something I’ve still been going on the walks, but I’m concerned. And it’s typical — it’s not bad enough that my mind is ripping me apart, waves of depression taking down the wall I’m frantically trying to fend it all off with, but then I get these pains and aches on top of it all.

Because I’d feel pretty decent right now if it weren’t for the shoulders and feet/legs, and we can’t have that. Oh no, no respite for Rich.

Sorry … that’s dipping into the self-pity a bit much. Which I’ve been doing a lot lately, I realize. I can’t help it. Still blown away that I got no results from that clinical trial, in disbelief after all of those trips and tests and hospital time and uprooting my family that I got NOTHING from the bleeding edge of cancer research. It’s hard to explain how disappointing that is. I try, but it’s like trying to explain a color or smell — people just don’t get it. Not sure I do either. I was so sure that was the answer that I allowed hope to creep in — let myself imagine me doing normal life stuff again, whatever that means.  Vacations, things with my daughter, diving.

And it hurts seeing others getting amazing results.  I’ll admit it.  I just wanted to have some too, sorry. I went through all of the same stuff, how come it didn’t work for me?

*sob*

As any terminal can tell ya’, “hope” sucks. Hope ruins you. Because we’re always one test away from hope destroying us, you see?

Maybe you don’t. Probably better you don’t. I envy people their ignorance of this world. All I know is I allowed hope to enter my thoughts again and then got destroyed, and I’m still reeling from it to the point that I can’t even find it in my heart to be happy for those it’s worked for. And that sucks, man. It makes me feel like the shittiest human being ever. But I can’t help it. I wanted more time with my daughter, don’t you understand?

I should probably end this there if I wanted a clean, pithy blog entry, but I have all of these random thoughts in my head.  The only one that appears at the moment, however, is how this week Facebook reminded me it was my friend Julie’s birthday this week. Except Julie died a year ago from cancer. I guess nobody ever adjusted her FB page or anything you can do when someone on there dies. It was quite the brutal slap in the face, though.  RIP, you.

Had a friend in town this week offer, when she heard I had chemotherapy on Monday and Tuesday, to drive me to one. Was amazing just having someone there to talk to, someone who I knew cared, to take my mind off things. I always would see people with friends in infusion centers over the years of doing this and quietly sigh that those closest to me (wife, parents) never really offered (at least that I can recall, I think my wife went in the early days a few times but my memory is totally shot at this point). Ever the pragmatist I just kept quiet about it — plus there’s no way for that request to not sound guilt-trippy. But it always bummed me out, so after five years it was a nice change for a day at least.

Ariana has been hanging on me lately, mostly because I think she saw the devastation of  my wife and I at the clinical trial failing. She’s been very protective of me lately as well. It breaks my heart but gladdens it at the same time, if that makes sense. Never in my life have I EVER loved something so much it truly hurt until she came into my life AND I realized what she was.  Took me a while but I finally got it. And now fate seems hell-bent on taking me away from her.

One of her favorite words to misuse is the word “fair.”  If we tell her she can’t have desert because she’s not in the “clean plate club” tonight (hasn’t finished her dinner), she exclaims loudly that it isn’t fair. Usually with faked (and sometimes real) tears and a tantrum for really rough nights when she’s already hit the wall 30 minutes ago and now we’re coasting on fumes just to get through dinner.

But this … this isn’t fucking fair.  And I know it’s ridiculous in some ways to say that. I know that others have it worse.  Blah blah blahbitty blah blah. It isn’t fucking fair, and piss off if you want to ridicule the statement. I don’t care about the other 7 billion right now, just my daughter and I. And if there were a crueler thing than to spend every day wondering if this is the day you break her heart, if this is the day she starts saying “I miss daddy,” if today’s the day I just become a memory of a father, etc., then I don’t know what it is.

I’m just feeding it now, circling the drain at my office desk and I need to stop and get some work done before I totally break down. Anyhow, I’ll post up as soon as I get some results, if not sooner.  Keep an eye on the Twitter feed for random thoughts in the meantime if you care to.

Cancerversaries and other oddities.

Home but can’t sleep again. Been in the hospital all week after not being able to stay awake, ironically. A Xanax and a Temazapam or some other chemical foolishness and here I am, downstairs on the keyboard.

This night, ideally, is one made for a joint burning low, feet buried in the sand of a midnight beach somewhere as the roach burns down and you feel the drug begin to pull at your soul and start the magic, listening to invisible waves crashing and the whisper of the water pulling back into the unknown.

Funny thing is I always wrote better hopped up on this chemical pharmaceutical garbage than the organic stuff. Listening to the 60’s on 6 channel and wishing I was in another time and place, that I could trade all this for a little shackish sort of thing on a beach somewhere 50 or 60 years ago with a surfboard, a little radio you had to smack a few times to get some real music instead of this modern fucking garbage, the musical pollution we suffer today.  Some good weed and all of these crosses on my back gone and just … waves, man.  Waves forever. Serenity, something I can’t fathom anymore. This battle’s been too hard, the meaning’s lost.

Can you see it, even if just for a second?  Smell the cloying scent of the grass, the taste lingering on your tongue as some Manfred Mann plays in the background, the smell of someone cooking down the boardwalk? Are you there with me, silently, the briny smell off the sand wafting by? No more cancer. No more anything. Just peace.

If wishes were fishes, I think the saying goes?

As of last week I’ve been fighting this battle for five years.  Five fucking years, man (that sounds cooler, btw, if you do it in Jeremy Pivin’s voice from Grosse Point Blank). I’m scarred, a shadow of my former self in so many ways besides simply the physical … 185 pounds or something ridiculous this week at PSL. What did I weight a few years ago, an obese-ish 250? There goes that problem at least, sucked into 2017 along with 5 or so shattered vertebrae, 6″ of my colon and who remembers what else.

The clinical trial, my CAR-T salvation, was a failure.  Did I post that here?  I think I’m still in shock about that. My numbers went up.  All that “fun” and money and time for nothing. I even had a woman visit while out there who had just gone through it, same flavor of Myeloma as me, 100% gone. Me?  Numbers go up. I don’t know if it was my cancer, or they fucked the t-cells up, or having floaters and travel nurses watching me and screwing up, who knows. Not much point in trying to find blame. It’s over, it failed. Just like the rest of the treatments.

Oh man. Four Tops doing “I Can’t Help Myself.” Swoon. Just something about good music in the darkness.

I have to get up at some ungodly hour tomorrow morning to meet my oncologist to sign off on the next treatment.  Carfilzomib, here we come. Guess this better work since I think we’ve been through about everything else except another transplant.

Blech, Beatles and I’m outta skips for an hour.  Damnit.

I was talking to a psychiatrist this morning, real strong German accent. Gorgeous. Amy asked if she blew me, and it being the third time I’d fielded that question today from her about someone female I just gave up and said sure hon, if it makes you feel better. If wishes were fishes indeed. Anyways, we talked, I cried as usual. She had some cool things to say and was willing to work with Amy and I, and Ariana as well. She apparently  has a background in pediatrics as well. She talked to me about finding the MEANING in this battle, in this consummation of who I was, really. I’ll have to ponder that.

Wish I could ponder it with a joint burning. Reference above.

And to Liz, thanks for the care and the spirit. It may be a day job but I enjoyed our talks and from a scary hospital bed a friend, much less one who’s seen as much as I think you have, is rare indeed. My humble thanks.

I feel like this is oversharing tonight, too much honestly. I just padded down here and the page beckoned.  It does that sometimes, pulls me in, sucks me in, makes me visualize Ariana reading this stuff someday printed in some archaic PDF I’ve left instructions to be made. Wonder if she’ll be able to reach across the years and see me here tonight in the darkness while she slept obliviously above me, know how hard, how fucking hard, her daddy fought for another day with her. See herself on that beach with me, maybe, not a care in the world, just a dad and daughter burning one to the sunset Gods and the never-ending waves in the darkness.

Jesus … and we end with the Sound of Silence, one of my all-time favs. Don’t tell me that’s not motherfucking kismet, man. My writing career, my life in a way. Words that resonate, each one, haunting, beautiful.

Hello darkness, my old friend
I’ve come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence
In restless dreams I walked alone
Narrow streets of cobblestone
‘Neath the halo of a street lamp
I turned my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence
And in the naked light I saw
Ten thousand people, maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never share
And no one dared
Disturb the sound of silence
Fools, said I, you do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you
But my words, like silent raindrops fell
And echoed in the wells of silence
And the people bowed and prayed
To the neon god they made
And the sign flashed out its warning
In the words that it was forming
And the sign said, the words of the prophets are written on the subway walls
And tenement halls
And whispered in the sounds of silence

 

Goodnight.

The Summer of 2017.

When I was a child I had a little stuffed bear.  I couldn’t tell you what he originally looked like even though I still have him — almost 47 years of wear and tear from myself and of course now my daughter, on top of being mauled by various dogs through the years, have taken their toll.  In fact he’s more triage than bear at this point.  A sad faded yellow with a white belly, a hard surface where presumably at some point the nose was attached, and covered with my father’s best attempts at sewing him back together after one of the labs would get a hold of him.  Stuffing leaks from unfixed holes in his belly sometimes and both ears could use some reconstruction work.

I’ve thought a lot about that bear recently. This just hasn’t been my year, especially physically — three surgeries have left me looking like him in my mind (with a slightly worse tan); scars across my stomach, translucent skin, no eyebrows or hair, etc.  As I write this, in fact, today marks just over a week since I was last in the ICU at the hospital and the longest I’ve been out of PSL in the last three months.

I realized something (well a lot of somethings, but one big one) during all of that time.

I have cancer.

I hope that makes sense in a non-patronizing way — obviously I know I’ve had cancer for over 4 1/2 years now. But up until this year it felt manageable, almost surreal … something you can picture, form words around, but not really understand.  As Dr. Mikhael at the Mayo Clinic pointed out to me years ago I wouldn’t even know I had a terminal disease except people kept telling me I did (and making me take drugs for it).

But this year?  This year I’ve watched, helplessly, as my health has deteriorated to the point where on a few of these visits I (and others) were convinced I wasn’t going to be leaving the hospital again.  Worst of all, at least to me, was having so much time to really think about that.  At the risk of making too broad an assumption I think most people would prefer to die suddenly, painlessly, their affairs in order.  But there’s a special Hell in just waiting and kinda wishing to die that defies me to really explain it satisfactorily, in crying yourself to sleep in an uncomfortable hospital bed thinking it wouldn’t be so bad if you just didn’t wake up tomorrow.  Even though the consequences on those around you that you care the most about would be so brutal — that tipping point, emotionally, where you just stop caring and the pain of it all trumps the logical, the kind, the caring.  Where you just don’t want to feel anymore, anything.

It’s that inflection point that really scares me about death when I think about it — when I can say to myself that I’m sorry, Ariana, but daddy just couldn’t take it any more.

I haven’t updated for a while, I should probably tell this tale.

VTD-PACE round four fucked me up pretty good.  It did its work, in terms of my numbers (which typically I don’t have handy as I type this), but the price was too high — I’ve been a medical dumpster fire since the end of the treatment and the khyphoplasty for my back fracture.

Things started like the post-PACE hospitalization week always did each cycle, with this overwhelming mental, physical and emotional sense that something was seriously wrong. Each cycle that’s gotten worse but round 4’s was impressive — I was a basket case for a few days. I can’t even put to words, were I even willing to share the thoughts and imagery, of what was going through my head. I would hazard a guess that the massive amounts of steroids in this treatment causes this reaction, but regardless it’s the death of all hope, this black pit that you can’t get yourself out of except by waiting it out.

Then the cold hit.  Having just been hospitalized for pneumonia I wasn’t too worried as I felt decent-ish and had just had an IViG infusion, but then the sputum I was coughing up started being mostly blood (sorry for the gross image) and other symptoms started appearing (body pains, shortness of and difficulty catching my breath, etc.).  Back to the ER and into the hospital again.  Turns out not only did I still have (or had developed a new) pneumonia, but I had mold in my lungs.  Aspergillis, if you were curious, although I prefer to call it “Bob.”  Aspergillis sounds like somewhere you have dinner in the Hamptons after beating the slaves or whatever people who live in the Hamptons do for fun.

And that, btw, is the end of the MMJ treatments for now.  Which figures — I take something like 17 medications and the only one that truly helped is now lost to me.  Yeah that warning about how immune-compromised people should probably avoid certain things?  Not bullshit apparently.

The mold thing led to a deeper problem — one of the main concerns with PACE is the damage it can do to your kidneys and other organs.  Same as Myeloma, really.  For the kidneys your doctors in the hospital look at the “creatin” number every day from the midnight blood tests (that’s when they do them at PSL anyways) as a proxy for that damage being done. On top of being already irritated, some of the tests (CT scan with IV contrast) can damage the kidneys as well, and sure enough in trying to nail down what the mold was and what it was doing my creatin shot through the roof.  All of a sudden I’m meeting kidney specialists who are assuring me we “probably” wouldn’t have to do dialysis and any damage “probably” wouldn’t be permanent while debating if it’s even safe for me to have a Tylenol.

How do you fix things before it gets permanent?  Tons of fluids.  Unfortunately when you have liquid in your lungs already from pneumonia the last thing you want to do is flood your lungs.  That diuretic treatment I’ve talked about before that makes you pee a lot, Lasix? Bad for the kidneys too.

Were that all I’m sure things would have gone smoother, but then out of nowhere I start experiencing excruciating pain in my chest that popped up one random day in the hospital and got so bad I needed painkillers to breathe.

One thing to note here, btw — if you are ever in the hospital and even remotely suggest to a nurse that you have chest pain, prepare for a lot of tests, a lot of monitoring and to meet all kinds of new and seemingly unamused doctors.  Immediately.  In my case it was diagnosed as periocarditis, an irritation of the sac surrounding the heart.  The CBCI doc rounding when this was discovered thought it was probably brought on by the chemotherapy, but either way they began treating it (I forget with what — was in there for two weeks and lost track of time) and within a day or so I was feeling better.

To deal with the mold, the infectious disease doctors (more specialists) wanted a certain level of anti-fungal medication in my system.  For some reason these drugs in pill form are super expensive so before I was discharged we had to make sure not only that my creatin (read: kidney irritation) levels were plateaued or dropping, but that I had the anti-fungals doing the work AND the pharmacies had more anti-fungals for me AND the other drugs I was taking wouldn’t interfere.  Apparently you’re on these for quite a while too.  So I get prescriptions called in and get discharged after two weeks at PSL.

Keep in mind the whole time I’m missing my daughter and freaked out about what she’s thinking — that’s a long time to be away from a 5-year-old, much less in a hospital she can’t even visit (14-year-old age restriction).  We FaceTimed every night, of course, but even sitting up and taking my oxygen out for a bit must still have been scary.  I’m still missing all of my hair, including my eyebrows, so me sitting up in a hospital bed in a hospital gown isn’t exactly the most comforting image.

On the bright side at least I knew, relatively, that I was safe.  So days pass, I felt a lot better, say 80-90%, and a’ discharging we go.

The next day we go to pick up my anti-fungals and … the insurance company refused to cover them.  For several thousand dollars of medicine too, otherwise I would have just eaten the cost.  Not thrilled since this was supposed to have been taken care of before I was even discharged, I let the doctors know and we planned to deal with it at a follow-up appointment a few days later.

I’m trying to get the timeline in my head right at this point but basically I got discharged on Friday the 29th of September here with a Monday follow-up appointment at CBCI. That weekend I felt fine until Sunday, when I started feeling exhausted and ended up going to bed when we put our daughter to bed around 7 pm.  Had the worst nightmares of my life that night as my health deteriorated throughout the night. Thankfully my father was able to give me a ride to CBCI but my wife had me take my in-hospital bag and laptop, because sure enough they re-admitted me that day.  Some of the CBCI personnel I know noted at later visits how bad I looked that day.

I actually thought that was kind of it again, really. I think we in general have this perception, perhaps due to the gravity of it all, that you know when the end’s come. In reality what I’ve learned and come to expect is just a slide into oblivion — the system overloads, the failures mount up and at some point it’s just too much.  Needless to say I was not in a good head-space at this point.

Spent another week in the hospital, more tests, and go home — pneumonia again plus more of the periocarditis-related issues.  A night later and I can’t breathe deeply without severe, stabbing pain and even with home oxygen canisters I had to take a few minutes after climbing stairs to catch my breath.  Freaked out but having oxygen and an appointment at CBCI that coming week I tried to grit through it but I was terrified — not being able to breathe is pretty awful, as are the thoughts that go through your head.  Is this my life now?  What do I do if one of these O2 cans fails, just die?

I emailed the oncology team the night before my appointment and told them what was going on and was admitted to the ICU the next day.  Queue tons more tests including a bunch of echoes which showed that on top of some liquid in my lungs I now had a large amount of liquid in the pericardium sac around my heart, a condition called pericardial infusion. Since there’s a limited amount of space there the heart can’t function normally which was apparently causing the pain and the inability to breathe properly, as well as my randomly going into atrial fibrillation (I think that’s how you say it).  So from 50-70 beats per minute my heart rate would suddenly jump up into the 150’s.

Oddly I didn’t notice when this would happen except that all fucking hell would break loose on the monitors attached to me and a nurse would come running.  It would self correct in about 5-10 minutes, usually before they could even get an EKG set up.

After consulting with CBCI and the specialists at PSL I ended up having surgery to fix the problem, which had ballooned into a full pericardial effusion, where the heart has so much fluid pressuring it that it can’t work correctly, and just short of a tamponade, when it stops being able to work).  The surgery was performed by this awesome guy named Dr. Parker with a ton of experience doing them and they took roughly a quart of fluid from the pericardium.  I now have a new 5″ scar between my belly button and my chest plus a hole where a grenade-shaped drain attached to the surgical site was attached for several days.  I’m on a few different antibiotics, antifungals and antivirals based on what they found when they analyzed the crap they drained out of me, but I’m alive.

Physically.

Mentally and emotionally I’m really struggling.  I relatively waltzed into 2017 by comparison, or as waltzy as you can get always knowing in the back of your head that you have a terminal disease. But after having 6″ of my colon removed, pneumonia twice, four rounds of salvage chemotherapy, mold in my lungs and now a quart of fluid drained from around my heart I just feel pistol-whipped.  I’ve lost a good 60+ pounds and look almost gaunt, a first for me, and not a good look combined with the lack of hair and eyebrows.  I get the chills out of nowhere, presumably from the weight loss, and energy drops I can’t explain.  I definitely do not feel right.

I guess I just feel like I’m cancer now, like this is some big waiting game.  Just when I’ve thought I had a grasp on my reality I’m shown this new level of horror and forced to face it and it keeps happening.  I’m tired.  God two days after I got out of the hospital the last time I had this awful Sunday where I could not stop either sweating or getting the chills and my skin was tingling and I was thanking whatever deity I could think of that I did not have a pistol in the house.  You just hit a limit.  But for some reason I just keep taking it, taking the pain, the heartbreak, the apologies to my daughter for not being able to be a more active or fun daddy sometimes.

Her hugs are about the only thing that helps, even though they break my heart.

I’m quieter now.  I’ve already experienced people not recognizing me physically thanks to this year but it feels different when I talk to people.  Awkward, a little.  I mean it’s always a lil’ awkward when you have cancer to talk to friends, we all know that, but this is different.  Like I’m an observer, almost, a third-party participant that doesn’t quite fit in.  Hard to explain.

On the bright side, if you can believe there is one, we got a puppy.  I really didn’t want a dog and my wife and daughter are allergic, but they found some hypo-allergenic cute five-month-old silky / Havanese mix. Not even sure I was leaving the hospital ever again I said yes, even though I prefer cats, but it’s worked out.  Beatrix is a bundle of love and a joy to just pet, and I think it’s what our family needed right now.  Besides pets pick owners, not the other way around.

And it’s not like I wasn’t already washing my hands like I had OCD with a kindergartner in the house anyways, right?

Lastly RIP to @CultPerfectMoms, someone I’ve followed on Twitter for quite a while now.  Her last blog post can be found here but she only lasted a few more weeks.  In a small way her struggle, and final acceptance, helped me when I was in the hospital to keep just taking a step forward even not knowing (or wanting to know) what was coming tomorrow to see my daughter again.  Thoughts and prayers to her family.

 

VTD-PACE, another SCT … must be Christmas.

I, um, yeah.

Fuck.

Got a call that registered as my oncologist yesterday, so I was emotionally unprepared when instead of a scheduler confirming something it was my entire oncology team. I apparently came up at the office’s weekly meeting.

Have some bullet points.

  • This Friday we’re stopping the Daratumumab. It’s not working on any of the numbers at this point except possibly slowing the advance of the Myeloma slightly. I’d share the numbers but for some fucking reason all of my labs show up on HealthOne’s patient portal except my Myeloma labs. USEFUL.
  • After review the team wants to proceed with VTD-PACE. I went into detail on what I know about that treatment in this entry, but I meet with one of the team on Friday to learn more and schedule it. Ninety-six hour infusion of Dexamethasone + Thalidomide + Cisplatin + Doxorubicin + Cyclophosphamide + Etoposide + Bortezomib. The first one will be in-patient, the next ones outpatient depending on the outcome and complications of the first treatment.
  • I was told that with few patient exceptions PACE works as the “fire putter-outer,” which I need now.
  • After a 50% or more reduction in my M-Spike and IgG, which they expect to happen within 2-3 treatments, they want me to do a stem cell transplant (my 2nd) six weeks later (time to recover).  This would be August-ish.
  • Once that’s done, most likely a CAR-T clinical trial. They are starting one up in September at my oncology office, but if that’s full they will refer me out.

This has broken me for the last 24 hours. Normally, or whatever the Hell that even means anymore after four years of chemotherapies and an SCT in another state, I can mentally compartmentalize bad news and just examine it in small, controllable chunks. Things like this, however, make my emotional wall about as effective as one made of sand in the face of a hurricane. I flip from this surreal sort of disbelief that this is happening, and happening so soon, to outright breaking down.

It’s hard to describe what it’s like to not be able to look at your own daughter without losing it. I have zero control right now.  I just … I can’t.  Not today, sorry.

Was sitting here thinking about how to express how I’ve felt since yesterday. With the exception of last night, when I bleached my brain out with a combination of the darkest, grittiest metal I have cranked so loud it hurt and a ridiculous amount of Crazy Train, I can’t even type the words. It’s too painful.

This is about as close as I can approximate:

Shame that show never lived up to its pilot.

As a cancer victim I’ve often marveled, usually in a disappointed sort of way, about the way my perception of life has changed after four years of this disaster. One example is how on that call yesterday I was told to probably expect more transfusions. Ever since the first one I’ve always felt guilty about being transfused, like there was someone more deserving or needy of that blood than me. I feel the same about staying in a busy hospital, like there’s always someone more deserving or needing that room and I need to apologize for taking up space and time.

The dark epiphany is realizing that no, those things exist for people like me. There’s a snap to reality there about how really sick you are that can be pretty brutal, this sudden and painful paradigm shift between looking at the worst-case scenario world you thought you understood and the universe making sure you know full-well that you are in fact in the epicenter of this nightmare.

I don’t know if that’s explainable in a real sense to people who haven’t experienced it. Let me put it this way: you know you have a terminal disease. But there are days when you KNOW you have a terminal disease.

Different levels of comprehension and reality sinking in.

Probably not going to be writing again until next week from the hospital (I promise I’ll include pics). I’ve penned a lot in the last few days, publicly and privately, and I just need Pandora’s Box closed again for now and to get off this pedestal and fade into the shadows to recharge so I can function.

On another note, as a relatively new user on Twitter I discovered two things this week:

  • You can “mute” people that your friends RT so you no longer see the RT’s. Way too much political stuff lately for someone who sits in front of several news feeds all day. I just want to hear and share cancer-related stuff so that was pretty cool — I can keep reading people’s Tweets but cull out with a lil’ work most of the non-cancer stuff I keep having to scroll past. I say this like it’s some new thing but I’m sure everyone but me knew it. I can say, however, that after a good hour of work today I have scrubbed my feed clean and it’s like a whole new experience.
  • When your feed is 99% cancer-related news and you’ve been following 5-10 new people a day from all sorts of flavors of Doom, DO NOT READ YOURSELF AWAKE IN BED WITH IT.  I can handle most stuff but I have ZERO defense against child cancer stories, which were the first things I saw from yesterday. Sobbing yourself awake as you imagine what it must feel like to be told as a parent that the therapies are being stopped and to just enjoy your remaining time together is … I can’t even imagine. I do know I’d rather be the recipient of the soap in a sock code red beating from Full Metal Jacket than ever have that experience in bed again.

I can’t turn this entry positive. I give up.

Cya’s.

I lost this title in traffic.

One of the annoying things about chemobrain for me is I can’t hold onto thoughts any more.  I know I *had* a good title and first sentence for this entry written in my head but somehow between the hospital and my office I lost it.

I blame Dan Carlin (the Podcaster).  His two shows, “Common Sense” and “Hardcore History,” are guilty pleasures of mine and I was enjoying one on the drive to work. DAMNIT DAN CARLIN*.

* Not really, I love Dan and wish he was our President.

While I’m thinking about it, I’m not sure I’ve ever really delved into my particular flavor of chemobrain.  Perhaps most annoying is that I’ve almost totally lost the ability to digress and then get back to my original train of thought. I’ve been trying to train myself to not do this anymore as a result because the number of times I have to ask “I’m sorry, what was I talking about?” is seriously embarrassing.  My vocabulary has suffered as well — I find myself struggling to recall words I know I used to be able to find effortlessly.

I’ve said it before (I think in the last entry, come to think of it) but when all you have to trade on is your mental faculties, watching them decay is pretty dismaying.  But you know what?  The hell with it.  There are things in life you can fix, and things you can’t. I’m not going to quit treating my disease so that I can recollect and use “antediluvian” in a sentence.  I’m already tempted to just speak in animated gifs and let people wonder what I’m trying to convey anyway.

uw0n5gv

Oh, PET scan versus stupid rambling.  Had the test this morning, my second ever.  It was fairly pleasant, really. Which is odd, right? We have to do so many unpleasant and demeaning things in this war against the big C that a little Monday morning RADIATION before coffee seems like no big deal. Got the injection, had a nice chat with the tech and promptly fell asleep in the chair.

Damn you, warm blanket of warmth and sleepy warm goodness.

And damn you cancer for making the extreme so commonplace that I not only can sleep through something that by all rights should be terrifying, but instead be thankful that I got some extra rest instead of having to sit at work.

So weird.

Anywho, after 45 minutes to let the radioactive sugar (think that’s what they use) percolate, the tech had me go into the giant expensive machine and I again fell asleep during both scans (lower body and upper body were done one after the other after shifting positions).  Really the only thing that really bothered me about this morning is it occurred to me that it’s total bullshit that I’ve now been irradiated several times by professionals and I STILL don’t have any cool superpowers.  How lame is that? I can’t even have like the ability to instantly find a good ramen shop anywhere?  I could be Captain Umami or something. As terribad as the last Avengers movie was there’s probably room for me now on the team.

*sounds of Avenger’s doing Avenger-y stuff: crash clang bite meow bzzzaaappp squish squish*

*cut to Captain Umami noisily slurping some shoyu ramen and giving the camera the middle finger*

Once finished with the PET scan I wobbled to my car in a sleepy fog and went to Starbucks for the morning triple venti no foam soy latte.  I almost wish I had done the recommended blood transfusion at last Friday’s Dara session but with the later-than-usual start time I wouldn’t have been home until like 7 pm at 2 hours per bag.  The PA that met with me pre-Dara last Friday, Sarah (who rocks socks and has almost as many “ooh, shouldn’t have let the kiddo listen to that song” stories as I do) said my numbers were iffy in terms of needing a transfusion but I could wait a week. As a result, zero energy right now to the point where I’m tempted to see if they can fit me in earlier than this Friday.  Hell I got tired doing my own laundry this weekend.  And I’m not in THAT bad a shape.

Also if my 5-year-old cutest-ever princess of a daughter suddenly notes very seriously that “Wu-Tang Clan ain’t nothin’ to fuck with” to you, please just nod knowingly and let me know so I can feel the appropriate amount of guilt and then figure out how to blame my wife. Thanks.

So back to ze PET scan. As I get back into the car at the Starbucks parking lot I grabbed the card o’ discharge instructions.

There was one.

“Drink lots of water.”

For radiation?

Look I’m not a nuclear physicist but something about “drink a bunch of water” to get rid of being irradiated just doesn’t sound right. I mean I’m sure it’s probably safe.  That’s why the techs bring the injection in a metal box, have the needle to do the injection encased in metal and have the nuke picture everywhere.  But you?  You’re fine! Just drink some water.

HMMMM.

Curious to see how much this Monday morning adventure cost.  Well cost my insurance company, at least until they stop covering me.  Which I’m not even going to get into because there’s so much hype and bullshit out there right now about this TrumpCare business that it’s just not worth it to dwell on here.  For reference I believe ALL politicians are inhuman soulless scum and this is just the latest example, but I really don’t want to get political beyond that. I hope it works out and even more I hope those who created this new mess, instead of thoughtfully fixing what was already in place, know (as new Twitter friend @MightyCasey recently put it to one of her local politicos): Winter is Coming.

But whatever.  Just like being irradiated pre-latte there are things I can influence and change, things I cant, and this is not a platform for either. I am truly sorry for those of you who were severely affected by anxiety over this stuff and probably continue to be. As someone who has struggled for the past four years since diagnosis with many of those around me adding to my stress instead of trying to help relieve it, I feel your pain, and last week was scary for me as well.

It has, inadvertently, added fuel to the “drug costs are too high” argument though. I found this article this morning which I really enjoyed.  I love how big pharma tries to play this issue off on PBMs and won’t tell you the “real” cost after discounts, PBM backroom sorcery and other assorted bullshit FOR YOUR OWN GOOD, CITIZENS.

Jackasses.

As someone who not only has taken a lot of cancer drugs but who also takes Revlimid and recommends Celgene stock for my clients, it amazes me that this is allowed. Then again perhaps not, given that we’re talking about the largest lobbying group by political donation in the States. Who are also fighting (along with police unions, prison unions, etc.) marijuana legalization because being on the wrong side of history is fun for the whole family and who cares about suffering, people!  Give those whiners opioids and tell them to shut the fuck up.

Not going there (marijuana policy) today, been in a good mood all weekend even with the exhaustion and that’s a HUGE hot button issue with me. A little snark and it’s time to move on.  To …

To … um, hmm.  I guess that’s it for the core dump today.  I probably needed some crafty pithy thing to say next but I’m just too tired to be pithy today. I’m pith poor (which is much more amusing if you say it in Mike Tyson’s voice). So here’s to hoping my PET scan has something good to show us and when I hear something I’m guessing you’ll be one of the first to know.

2017 With a … Bang?

Going to keep this relatively short, which for me is just a small novella instead of the first seven letter volumes of an Encyclopedia. Do they still have those btw, or has Wikipedia destroyed that?

Been thinking about this blog quite a bit, specifically that I think I can handle writing here again without the emotional side-effects being quite as severe. As someone who spent a good portion of their adult life writing and blogging (not here), I found that sharing everything in almost a stream of consciousness sort of “core dump” made for good reading and valuable introspection but at the cost of opening a Pandora’s Box I couldn’t control emotionally. When I was just writing about dating, poker and other silliness that was one thing, but the issues revolving around cancer, and what’s more having a terminal diagnosis as the parent of a young child, became something well beyond what even good anti-depressants and anti-anxiety drugs could cope with. And at the end of the day I still have to function, something I found almost impossible when I forced myself to think too much about things (I’ll write about that concept some day, come to think of it).

I need a way to keep in touch with folks because I simply can’t do it now even with the relatively small circle of close friends and family I keep in the loop. the energy simply isn’t there, as ridiculous as that probably sounds to folks who’ve never experienced what the side-effect word “fatigue” mean thanks to a disease.  Facebook is nice for that, but limiting in ways I just don’t enjoy — so like, while I do believe you have the right (within reason) to put whatever you want on your own FB page, sometimes I feel what I write on there regarding this particular nightmare is a fucking bummer that’s both too personal and, paradoxically, not personal enough. So I decided on two things — uno, I’d go back and post here any cancer-related FB posts for continuity (most from 2016, although I’ll have to go back and see what else I skipped when I have some time), and two, I’d just post executive summaries or TL:DR versions on FB with a link to here. That way people have a choice of how deep down the rabbit hole they want to go with me.

This is like an epiphany I’ve had recently.  It’s probably in some social media how-to book from a billion years ago written by a monk who had taken on a lifetime vow of silence and lived in a cavern towering over whatever the hell that area he was in was called back when there was just one continent, Pangaea, which may honestly be complete bullshit because when I think about it the only way I know that is from video games that really probably shouldn’t be taken as gospel as for being a reliable way of learning the history of your own planet but yeah so anyways this monk who noted that using this exact same method, presuming that someday someone developed the concepts of digital, well, anything, or electricity for that matter, much less global communications systems, the internet, and indeed not only social media but also specifically Facebook and Twitter, would be really nifty. And here I am thinking I’m a fucking genius.

* The preceding paragraph may have been brought to you by the letters M, M and J.

Further, if I’m being honest, I’m also not being good about my book — which is a problem since the chemo-brain has really been terrible lately and I’m forgetting more than I’m remembering some days. I had a few friends over for the UFC 207 PPV last weekend and my ability to recollect fighters names is just gone to the point where it was really embarrassing. I know people get it but as someone who’s never had looks or a trust fund, intelligence was one of my few good marketing points (kidding) that allowed me to feel at least somewhat good about myself (not kidding) and now that seems to be going too. More than a little concerned about this, but nothing I can do about it. Anyways point being I’m always randomly coming up with things I want to touch on but don’t write them down, which means those thoughts are just gone now thanks to this awesome ability to 100% forget them a few moments later. As I solidify the structure of how I want to present things in the book so the flow makes sense that’s just not OK anymore.

Going to go backwards in time from this morning (BTW linear time is nothing more than a tool for me, so sorry if I jump around a lot) so a few things make sense. Around Thanksgiving I had another attack of diverticulitis, something I have suffered from for over a decade.  Usually attacking between 0-2 times a year, I get this pain in the same exact spot in my left lower stomach quadrant every time, go to this amazing GI guy (same guy who figured out I had cancer) at Rose who orders tests and a scan or colonoscopy if it’s been too long and then prescribes some antibiotics to get rid of it.  Problem is I’m on attack #4 by around Thanksgiving for 2016, so when I call to find out what he wants me to do he calls me back from vacation to tell me it’s time to go the surgical route and gives me the number of a well-respected surgeon here.  No date yet, although it’s looking like mid-January — the surgeon wants to get in touch with both the GI doc and my oncologist at CBCI to make sure he adjusts the surgical plan to be safe given my disease.

As part of that plan I had a hastily-scheduled meeting with my oncologist Dr. M. today (who is also in charge of the Colorado part of the clinical trial I have been in).  Given my numbers just going sideways and the need for me to be off chemotherapy for months due to the surgery he has taken me out of the clinical trial for good.  I think it’s too soon for me to have any perspective on that decision, but when my wife texted me asking how I felt about it my first reaction was disappointment.  In no specific order,

  • The numbers will start going up again.  The only way to spin that positive is that my oncologist wants me to get into a clinical trial for Darzalex (daratumumab) that is apparently hard to get into, and one of the requirements is the #’s have gone up from a previous treatment.  That sounds clinical but in real-speak that’s “you’ll be off chemo for two months with cancer rampaging through your system and the associated risks. Like death.”
  • Even if I don’t get into that trial, he wants to start a Darzalex-based treatment.  This is a newer drug, approved in 2014 or ’15 stand-alone and just two months ago for use in the more common cocktail approach taken with multiple myeloma.  This is one of the new monoclonal antibody treatments that have been in the news so much.
  • My contact will switch from the research nurse, who I loved, back to the oncologist’s coordinator, who I also loved but I’ll miss the research nurse.  Sarah rocks socks and she’ll be missed, although she promised to come by and say hi when I’m in clinic.
  • Yet another failed treatment.  It’s impossible to gather up hope when I’m on what, #6 now and well into the experimental and newest stuff?  Normally I like new things.  Like TV’s.  Or food.  New things like chemotherapy where nobody knows what the long-term effects are (or sometimes the short-term) are a lil’ scary.  So is mixing them with experimental stuff in a clinical trial to see what happens.
  • At least I’ll be off Dex for a few months.  The clinical trial had me on the max dose and I was NOT enjoying it or any of the side-effects.  Nor were the people around me, although I feel like I roid-raged a lot less this time than when I was on this dosage level back during chemotherapy #1 (CyBorD).
  • In fact, this will mean not taking 94 pills a month, an end to the monthly 24-hour urine collections, the EKG’s, etc. for at least a few months.  That doesn’t suck.  Actually I didn’t mind any of it except the pills and the urine collection, although I’m still on over 100 pills a month even without the chemo.  Which reminds me that I fucking forgot to ask which of the prophylactic meds I was taking due to this chemo I can get the hell off of now, grr.
  • Darzalex is IV-based.  On one hand that’s fine since I don’t really care and have the port now (plus two other IV’s I do anyways for all of this), but on the other due to CBCI being 30 minutes from my house and my office that means more missed work.
So I don’t know — mostly negative but with cancer I’m always trying to check myself because it’s too easy to just see the negative, you know?
So that’s the short-term stuff.  I have some things to jot down about the holidays, my marriage, Ariana, marijuana, etc. but it’s going to need to wait since this is already a novel and as much as crying at my office desk SOUNDS fun I think I’m going to pass today!  Two venti triple no-foam soy lattes on the back of 40 mg of Dex last night and this morning’s news isn’t really placing me in a reflective serene mindset anyhow.