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.

Like I’m almost gone, yeah.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You get used to it, I guess.

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

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

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

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

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

Indeed.

In-patient VTD-PACE, last night.

So here we are, last night (knock on wood) of the in-patient portion of VRD-PACE. Yeah I’m about ready to go stir crazy here so good timing.

Honestly, and kind of strangely, I’ve been in a really good mood all week. I’m walking a lot more than I usually do in the hospital (granted, I’ve been in 6-7 times in the last year for respiratory stuff and walking was not on MY top 5 list on those trips), cheerful.  Mostly bored, really.  I think the hardest part of this has been a combination of the steroids and the isolation — for all that I and others were worried about side effects, those apparently come next week. This week at Presbyterian St. Luke’s has mostly been about keeping occupied and not nauseous.

Although if you’re going to do inpatient chemo for 4 nights and 5 days, do it RIGHT.  Please note the following picture will offend and perhaps increase nausea in the Doomed who can’t look at any non-raw non-GMO non-vegan non-flavorful meal.  Or Darth Vader:

18699916_10154624950168097_2090791697427837296_n

The despecialized (un-re-edited) version of Star Wars and a 12″ from Fat Sully’s. Probably not the best anti-nausea fighter. Or the healthiest meal. Or the easiest to eat in a hospital bed, for that matter.

I care.

Awesome ‘za.

Hey when you live sort of in the sticks, being downtown with 3rd party delivery service is like a dream come true. Had a wicked bowl o’ ramen last night with some pork buns.

So yeah, not too bad really. The steroids have been the hardest medication to deal with so far. Forty milligrams a DAY of Dex has taken me beyond restless leg syndrome and into a Steve Martin comedy bit.

giphy1

Once I get to sleep I can stay there like a zombie, but being a night owl it’s soooo hard to actually get to sleep here for me. Trying an Ambien tonight … not a giant fan but I really cannot take another night of 40 laps around the onco-ward all tired but so jittery I can’t shut my brain off.

Also thanks to all those who swore to sneak me in some, erm, greener products. Appreciate and I love you but probably best if I don’t get booted out of the hospital, lulz.

Had some visitors today which was awesome (thanks!) and … I dunno what else, really.  This much time in a hospital all flows together until you aren’t sure what day it is and whether you’re coming or going, you know? I play games, watch movies off the home theater PC on the laptop and try not to puke.  I almost got caught today, that sudden salivation feeling you get, but the nurses responded so quick it was laughable.  They really have been great here: Julia, Tara, Campbell, Shasta, Rita, Kellie (note to self, check that list). I have to come in Sunday, Monday and Tuesday (FFS) for appointments so I’ll bring them something special.

You spend a lot of time thinking in the hospital, or at least I do. I’ve been wondering lately if cancer is just how we die now. In lieu of being eaten by saber-toothed tigers maybe this is the “new normal?” It’s hard to argue with some of the startling facts you find of incidence rates these days. Granted I would prefer, given the choice, of going in a slightly more pleasant way, but perhaps this is what we have to get used to. I can accept that, I think. In fact really the only cancer that truly gets me down, that I have no defense against, is childhood cancer. As mentioned before it’s just too goddamn much, too unfair.

I’m also having trouble not falling into the sheer hate aimed at the GOP lately. I try to see the best in folks, if I have time, but it’s been really tough for me lately.  I’ve always been a fiscal conservative and socially moderate agnostic, so I left the parties behind decades ago to force them to market better candidates to me.

Yeah, we see how well that plan worked out.

Seriously though — I’m reading an article today about some Washington Congresswoman and you just know, you KNOW, that if one of her three kiddos was diagnosed with our special sort of fun she’d be the first in line voting NO on this crap. Instead she’d be out sponsoring bills for medical marijuana, better healthcare, etc.

It’s just so fucking selfish, and as I come closer to the end — even if not a cancer-based one, who knows? — I find that flavor of selfishness so fucking disgusting that I just want to slap these people back to reality.  Why can’t they leave what’s in place there and just FIX it? That gets you re-elected. This scorched Earth policy is not. And as I reach further out from this little room on Twitter and Facebook and read story after heartbreaking story it becomes harder to control my disappointment and anger. Representative government, indeed.

If we don’t try to keep each other healthy, what’s the fucking point?  To die with the most toys like some Egyptian pharaoh?  For the love of the Almighty (whatever), c’mon already.

I don’t get it. And I apologize, for what it’s worth, for being a tiny bit political here — this week’s isolation has brought it out of me a bit on Twitter and I don’t like it.

Anywho, going home tomorrow night — my 24-hour chemos end at 4-5ish pm and then I’ll … well, “bolt” is a bad word for being released into southbound 5 pm Friday traffic, but I’ll be bolting as much as I can =)  I miss my daughter and wife, the comfort of their hugs. How they smell.  That sheer “rightness” of being home with them where I am supposed to be. I wish Mischief was there to greet me too but that’s a story for another time.

Talk to you soon and thanks for the kind DM’s on Twitter, comments here and other stuff — it means more than, well, actually it means what most of you already know.  but it’s pretty new to me so thanks and hugs.

VTD-PACE, days 2-3.

Just a quick update. Other than some nausea and some 4 am hi-jinks with a separate IV things are going smoothly.  Not enjoying the Dex at ALL even though I am in a cheery mood, really.  Hoping the drug who’s name I’ve forgotten since Monday is helping with that.

The biggest issue, really, has been boredom. When I’m on high-dose painkillers, my usual regimen for being in the hospital (due to the flu or pneumonia), the little aches and pains don’t bother me.  I’ve found this time I can’t get super comfortable, so I’ve been sitting in a chair in my room on the laptop when I can. Sadly I have a brand new lap desk sitting at home but everyone I know outside of the hospital that would bring it down here is sick =/

Second would be the Dex … normally I would get 40 mg a week from what I’ve experienced with with it before.  With this chemo I’m getting 40 a DAY.  Let’s just say my restless legs have started their own band.  I’ve also put on over 15 pounds in 3 days!!! All water weight and being retained by the various chemicals, but now I’m on Lasix which helps you pee.

A LOT.

That’s a pill btw, not the eye surgery.  My nuts see just fine.

One risk I think I talked about before with this, and I keep forgetting the damned name of, is that the PACE works quickly and explodes the bad cells (and some good ones too I’m sure). So the nurses and doctors monitor various things like calcium and magnesium (think that’s right, I’m a lil’ fuzzy).  Anyways, my calcium is up so hopefully that means this is doing some work — that’s part of my good mood.  If you have to go through this it might as well work, right?

I know the really bad side effects are days 7-10 once I’m home, but keeping my spirits up.

THIS.  WILL.  FUCKING. WORK.

That’s my prediction.

The nurses here at PSL are great on the cancer ward (and presumably elsewhere here) and have made this a lot easier.  Quick responses, intelligent ideas, etc.  Today’s nurse, the awesome Tara, is usually a charge nurse AND she lives with a coordinator for my care so I know I’m in good hands.  Add to that Kellie and Rita (mostly adding these here so I don’t forget the names for a thank you, btw) and it’s been a pretty smooth ride.

Been doing a ton of walking every day as well.  Not sure what that accomplishes but it breaks up the boredom and seems to be appreciate by the nursing and doctor staff.

Man this is a Facebook update, not a richvsmm post.  Guess that’s alright sometimes.  If it helps you rest easy that I haven’t turned into a Hallmark card, though; I did send Congressman Ken Buck from Colorado a “Rich” Tweet yesterday:

If it helps, though, my 5 1/2 year old Facetimed me yesterday without her mom’s help … after she got bored she just started staring at the TV over the top of the iPhone though so we cut it short, heh.

And here … we … go.

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VTD-PACE, first day of treatment.

Got to the hospital around 8:15ish in the morning. Pretty sedate day, really.  Port accessed, blood tests taken and then a lot of downtime before the pre-meds and the cocktail of Doom was ready.  I spent most of it sleeping … I’m on a new sleep aide that I started Saturday that is also supposed to help with the Dex side effects and I think it’s working a bit too well.  Thankfully I was able to just relax and get some rest today. My blood counts, for once in the last few months, were not bad enough to merit a transfusion too so yay!

For those who missed it and don’t know, VTD-PACE is a salvage chemotherapy.  Our plan is 1 of these treatments per month for 2-3 months followed by a stem cell transplant (auto, meaning my own stem cells).  This year my Myeloma started to get ornery and the numbers are a bit out of control, so “salvage.”

I’m currently getting Velcade (shot in stomach), Dex, Cisplatin, Cyclophosphamide, Adriamycin and Etoposide. I was told most of the side effects are the typical ones (nausea, fatigue, hair loss) but that each drug had it’s own idiosyncrasies in terms of dangerous ones. One can damage the heart, one can inflame the bladder, etc..  On top of that there’s a risk that the chemotherapy destroys the cells (there’s a name for this) in your blood stream that can end up causing kidney damage.  Those side effects are why I’ll be getting monitored every 6 hours until I’m released on Friday. The lenalidomide (sp?) will begin hopefully later this week as soon as it arrives (hospitals apparently don’t stock the stuff and mine hasn’t been sent yet but the oncologists are on top of it).

Because of my past with it I’m mostly concerned about the Dex. 40mg a day for 4 days or something equally as absurd. Hoping the new sleep aide who’s name I keep blanking on (I cheated and looked it up, “Zyprexa”) will help — it’s an anti-psychotic that also helps with sleep. Since I’m pretty sure they frown on blazing up a joint in the hospital room you go with whatcha’ got I guess.

I do feel hopeful by the way.  Never assume just because I tend to come across as bitter here that it equates to “hopeless.” I am bitter a bit, but it’s rare that I’m not thinking of something funny. That goes back to some MASH episode I watched decades ago, btw.  There was one I’ve never found again where Hawkeye (Alan Alda) is explaining to someone that the reason he and his friends do all of the crazy stuff is that if they didn’t, in the middle of a triage camp in Korea, they’d go insane from the horror. I 100% get that. Looking at photos of people wearing silly costumes and stuff to chemo it’s obvious to me that most of us get it.

I mean it sucks, right?  So have fucking fun with it. Met some really amazing people on staff at CBCI and the hospitals over the years just by making them laugh. After I finish this entry I have to make a list of documentaries I’ve loved for nurse Rita, another awesome nurse at PSL that I’ve worked with before.

Not only am I hopeful but I’m in a “fill it to the top and let’s kick this fucking thing’s ass” mood right now.  Enough’s enough, and if I have to live through the next two weeks with all the fun side effects, etc., I not only better get some good results or I’m, well, I dunno.  We’ll try something else and rock that. Whatever, you know?  I think being pragmatic and active in seeking treatment’s the best you can do in this situation, and I’m doing it.

With lots of cool stuff I snuck in from Trader Joe’s and hid in the closet.

Shhhh.

Nothing too deep to get into today — I’m in a good, positive mood and I’d rather not risk giving that up quite yet by getting into things. I’ve had to do some hardcore “don’t think about this” work in the last few days which, except for my daughter crying and telling me she didn’t want me to go” repeatedly (which broke me down last night) I’ve been mostly able to do. I’d like to write about my visit to the scuba shop I used to work at this week but we’ll see.  Trying to avoid the known triggers right now for obvious reasons.

One thing I would like to mention, and I’ll be putting up some sort of Surgeon General’s warning page about this when I find the motivation (and some other blog fixes I have in mind). I write to exorcise things. I do it in a style that makes it read smoothly (well, most of the time) because I did things like this for a living and learned how — I think in column format now when I write. It works brilliantly most of the time but with a caveat — those who read it tend to only see the negative things I’m writing about and assume that’s me.

It’s only half at most, though, the Mr. Hyde half.

That being said, I firmly believe EVERY cancer patient has the thoughts I write about and similar reactions even if they keep them quiet. I made this blog public because I prefer straight talk and it was frustrating to me when I was first diagnosed to not be able to find that level of brutal honesty in most of the blogs I ran across. Which is fine, right? Look not only do I think it’s great if your faith or your indomitable positive spirit is what gets you through, but I envy you in a lot of ways if you’re that person. It’s just not how I operate, and as a result this blog is going to read as bitter, angry, crass … you name it. So if you need more positive emotions I won’t be offended, promise.  Hell hook me up and I’ll check them out!

But pssssstttt … if you too get frustrated with your personalized death sentence, rest assured that others have felt it, and I’ll be your voice if you don’t want to admit that to people. I understand that too. K? I bet there’s at least one person reading this who not only would never in a million years drop an f-bomb and cringes when I do. But staring at those ceiling titles one day trying to justify all of this in your mind, you dropped one. Even if it never crossed your lips. And that’s OK. Don’t say it out loud; I’ll say it for you and it’ll be our little secret. You deserve that F-bomb, my friend. Fuck cancer, and fuck chemotherapy, and fuck what it’s done to our lives, the experiences we’ve had to have, the fear of test results, the never-ending hypochondriac level of concern when something new happens, yada yada yada.

You aren’t alone. And as I’ve discovered four years into this, neither am I.  I’m amazed in just the last month how many really neat contacts I’ve made in various cancer communities and what I’ve learned. I’m happy to help you get started with that as well, if you ever need it — just message me.

As long as you promise to understand what this blog really is and that it’s not all of me, that is.  Hope that makes sense.

Will post updates when I can. Here’s a pic as promised … one interesting thing I hadn’t seen before is the amazing nurse Kellie put brown bags over two of the chemo drips. She told me that was because some of these chemos are light sensitive.  Trippy. She also recited from memory what each does and the side effects which impressed the hell out of me. You can see the bags over the IV bags here:

IMG_5920

And look, that’s almost a smile!  Well sorta, the really smiley pics were just fucking goofy and as you can see I have bed head, hah.

Also that GIANT bag on the right is a 24-hour infusion. That makes your urine red, apparently.  Things that it’s amazing to know about BEFORE it happens. So thanks again awesome nurse Kellie!

Also I am not photogenic. In 46 years I have come to accept this. Goofy ears, still a bit overweight (but getting better!) and the signature scowl do not a paparazzi’s wet dream make.

Have a fun week and I’ll be in touch.

 

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.