3 a.m. Skittles

It’s been somewhat of a crazy few weeks that I haven’t entirely, or at all for that matter, processed, but I figured I should get something down here before I start forgetting things.

So a few weeks ago Amy and I came out to Nashville for my final week of tests. These set up a “baseline” to compare to after the procedure and included all sorts of blood tests, a PET scan and a bone marrow biopsy. Once those were done I went through three days of lymphodepletion chemotherapy of fludarabine and cyclophosphamide which wasn’t too bad (23rd-25th) — this chemotherapy prepares your body to receive the re-engineered T-cells.  Amy took off the next day back home, and the day after I Uber’ed to the hospital (the 28th). On the 29th I was infused with my re-engineered T-cells.

I’m now genetically modified. Bizarre.

Oh another thing to mention that’s kind of interesting is that they use the HIV virus to reprogram your T cells. As a result for a while I’ll test HIV-positive.

Leading up to this mentally and emotionally was rough. My parents decided to pick this time to start an immense amount of unsupportive, toxic drama even with me begging them to knock it off and see the bigger picture. I was terrified of being away from my daughter for this long (3 weeks) and how that was going to affect both her and me, frightened for my marriage (parent drama factors into that one, but that’s a while ‘nother Oprah), and of course scared about this procedure. We’re well beyond the part of the map where it says “Here Be Monsters” with this Car-t stuff.  No long-term data on efficacy or effects.  No guarantees about how this is going to work for me, and what to do if it doesn’t have stellar results.

Even the morning of the flight out here I questioned whether I should be doing this. In the end, though, the opportunity was just too good to say no and so many had given so much so I could get this chance. As I’ve talked about before there’s a giant guilt factor associated with cancer from all different aspects, and I realized this was a new one — that I was being given a chance to take part in a clinical trial that was a life or death chance for people who’s cancer was as far along as mine was. What right did I have to come this far just to throw it away?

So on the 29th I got my cells back, which just like a bone marrow transplant is somewhat of a non-event. I got my cells around 11:30 am and spent most of the day reading, until about 5:30pm when I noticed I was having wicked tinnitus and nausea. I called the nurse and my temperature had shot up to almost 103, I was dizzy, felt weak, etc. This is the dreaded cytokene release syndrome (“storm” or “CRS”), which to me was the scariest part of the process — the problem is you don’t know when or even if you’ll experience a storm. One nurse told me it’s a good thing to get one as it implies the treatment is working (an old wive’s tale as far as most medicines go, but who knows with Car-t). They can happen as soon as I had mine, or weeks after you leave the hospital (Jesus, that would have been terrifying). You can even have more than one, apparently.

All I know is mine was fucking awful. My brain went into full-on scrambled egg mode and I couldn’t even answer simple questions like who the president was or what year it was. I also had this super-annoying sensation where I felt like I had to urinate when I didn’t, which had me constantly going to and from the bathroom.

Somehow I managed to get to sleep that night only to wake up with a headache so bad I couldn’t see straight and just brutal nausea. We were able to medicate most of that away but I couldn’t convince the staff to give me any painkillers more fun than Oxycontin because my heart rate was dropping low enough that they were considering sending me to the ICU. I slept off and on that day but sleeping with a severe headache is, at least for me, just about impossible.

Then on Thursday things started to clear up, and by Friday I had an appetite and was able to keep some food down.

Since then it’s been mostly quiet.  I’ve had three friends who came out here on their own dime just to hang out, which meant the world to me, and all three of us had some great talks.  I’ve had a fairly high success rate bribing the nursing staff to grab me Starbucks (there’s one downstairs) as well, and I’ve just been reading, sleeping and gaming a bit. Just like with a bone marrow transplant, boredom is the real bitch.  Oh, and a woman I’ve talked to online several times, Cherie, came to visit which was awesome. Cherie is in the same clinical trial I’m in and in her case the treatment completely eradicated her disease. As in Myeloma-free. She and others like her are why this particular clinical trial is so sought after.

I go for late-night walks around the floor every night with my Kindle and enough change to get a bottle of water and some munchies.  It’s a poor replacement for when I was home and would grab a glass full of frozen mixed fruit every night (my snack of choice). Although there is something to be said for Skittles and Twix bars at 3 a.m.

The Dude Abides.

Sitting here with my wife and daughter Saturday night, idly typing while a movie plays and  lost for a moment in what normalcy must feel like. You forget, you know. So many months, years, of the anxiety, the chronic pain, the never-ending appointments, the sleepless nights.  It’s so hard sometimes just to remember what normal was.

Amy and I got back from Nashville yesterday. I’m grateful she was able to come with me and for her parents stepping up and staying with Ariana and Trixie while we were gone. I would have been screwed if I had gone out there solo — just too much emotionally and physically for me now. But almost as importantly it gave me some alone time with my wife to just talk, something we haven’t done enough. Ever, really.

So after a relatively quick meeting and bloodwork on Wednesday, I showed up at the apheresis department at 7:30 am to have my T Cells harvested.  This is done by a process called leukapheresis (I linked a photo of this on Instagram and Twitter if you want to see it). So I had an IV put in each arm, and from 7:30 am until 3:15 pm it cycled my blood through a machine that separated out the white blood cells. I slept through the process for the most part, having not slept well for the previous few nights. Other than being extremely cold during the process it wasn’t too bad, although when it was done I was pretty wiped out.

Mentally and emotionally this was a really hard week. My disease has progressed fairly substantially … my bone marrow biopsy from the previous week was 95% Myeloma, the highest I’ve ever recorded.  I talked with Dr. Berdeja about that briefly during the harvest and while he thought they may just have hit a pocket of bad cells to get that number, it’s still pretty scary. The skeletal survey wasn’t much better … while I don’t even understand half the terms in the analysis, I know it’s not good:

“Small 5 mm and less fairly diffuse round lucencies throughout visible skull on lateral x-ray of skull.  Scattered similar small round lucencies in cervical spine and thoracic spine.  Moderate T12 compression fracture.  Moderate L2 compression fracture treated with vertebroplasty.  Right internal jugular Port-A-Cath in satisfactory position. Previous right upper quadrant abdominal surgery. Scattered small round lucencies in multiple ribs. Small round lucencies in mid left and right humeral diaphysis intramedullary. Ovoid lucency in left lateral upper acetabulum deep to cortex. Pelvic phleboliths. Small lucencies in proximal femoral diaphysys intramedullary.”

Even not understanding most of that (I’ll have the doctors explain it this week, have an oncology appointment on the 24th), I know it ain’t good. Also now I know why my goddamn back has been killing me even after having that L2 vertebrae fixed; apparently the vertebrae two above the fixed one is fractured as well. Christ. Not even sure what to do about that, but I guess I’ll find out.  Right now the name of the game is to not fuck up my qualification for this clinical trial so I’m walking on eggshells and making sure everything is run by Nashville.

Other than that and fatigue I’m having what I can only assume is neuropathy in my toes.  It started a few months ago and I let the oncologists here in Denver know, who told me to let them know if it starts to hurt. It kind of feels like a combination of all of your toes being on pins and needles and numb at the same time, hurts to the touch, but now is creeping towards my heels. Definitely makes walking a new and unpleasant experience, so I’m doubly thankful I’m done doing so in airports for at least five weeks. Although I did for the first time in my life get a courtesy cart ride this time, and man, that’s the bomb. I was so excited to not have to walk from the car rental place I gave the guy a $20.

Assuming all goes to plan, I will be re-evaluated on May 21st in Nashville, start chemotherapy on the 23rd for 3 days, and then admitted to the hospital on the 27th. I’ll get my re-engineered T Cells back on the 28th, be in the hospital for two weeks, and then outpatient in Nashville for two weeks. Before all of that they want me to do some form of chemotherapy as well which I’ll start this coming week — it apparently has to be one I’ve already done previously and has to end before May 8th so I’m “clean” for two weeks. My oncologist here and the one running the trial in Nashville have apparently already coordinated on that.

So that’s the mechanics and logistics of it all. I spend a lot of time trying not to think about it (and failing miserably). It’s just so … big. There’s so much riding on this, so much logistically to work out especially with a kiddo in school, so much danger. There’s no long-term knowledge of what happens with this, and there’s a good amount of risk involved (although they seem to be aware of how to deal with most contingencies). But it’s pretty scary. Spent a ton of time in my head this past week and I think the only thing that saved me, especially with the lack of sleep, was having Amy there.  I know we’re having problems now but the ability to just ask someone to spoon you for a bit while you cry quietly, versus having nothing there but empty space and feeling like nobody cares, is worlds apart.

As I said earlier we talked a lot on this trip. Neither of us are religious but at one point I was talking about how it’s taken all of this shit for the past five years to scour away the person I was (the bad parts). The fucked-up upbringing and ideals I had, the complete lack of knowing and experiencing what a good relationship and intimacy are supposed to be like; what a good person is, really. Although ironically now perhaps too late due to this disease, I feel like I’m on the right path as a person. Kinder, more thoughtful, more loving, less cynical. I have my moments, of course. But it’s a startling change from who I was, I can tell you that.

Amy commented that perhaps this is what had to happen, that this was the universes’ plan. This is something I’ve struggled with most of my life, really. Raised as a non-believing Catholic, finding out I had cancer put the kibosh on any sort of belief in a higher power. Which I think’s common with cancer patients or anyone else struggling with their health or things in their life — the constant emptiness that threatens to break you down when you just ask the constant “why me’s”, you know? Perhaps she’s right — it definitely made me think, and I will continue to do so.

Although to be honest I wish I could just stop, thinking that is. The gravity of all of this is sinking in and it’s tough to grasp at times. I didn’t feel so much like a guinea pig in the last clinical trial I participated in, partially because the main component was an established Myeloma drug that they were just adding another drug to (so I didn’t see much downside risk). This time though the reality of what we’re doing is seeping in and it’s scary. No idea of the long-term effects. Cutting edge sci-fi-ish technology. Only a handful of people on this planet have done anything like this. Which is an interesting thought in itself — am I just lucky for the opportunity, or one of the worst off? A bit of both I think.

And what do I do if it doesn’t work?

And what do I do if it does?  There’s a woman who just went through this study from Texas that I’m in a Facebook group with and have communicated with. She was in a similar place to my own in terms of disease progression.  She just got the news she’s now in complete remission.  Complete. Remission.

I’ve been doing this for so long, had every treatment fail after such short periods of time, that I can’t even really get my head around that. What would it even be like to not be in pain anymore? To be … normal? I try not to get my hopes up too too much because that way lies madness as well, but man.  Just … man.  I can’t imagine.  No more daddy’s too sick for this, or too tired for that.  No more pity.  No more tears of despair. I’ve lived with this stuff for so long it’s become my life … to actually contemplate feeling human again?  It’s a bit much.

Knowing me I’d probably just feel guilty that more people didn’t get to experience it.  Yeah I’m wired strange, I know.

Lots of questions, things to think about, things to avoid thinking about. I try, and sometimes succeed, in keeping my spirits up though. And chew Xanax like candy. At least I’m sleeping better … I added St. John’s Wort (spelling?) to my cocktail of nightly sleep meds (1mg of Xanax and 1mg of Ativan) and I’ve been sleeping through the night better.  Still have trouble shutting my brain off to get there but at least when I do it’s solid sleep.  Too solid, I just want to stay in bed every morning now.  But there you go, another tip from a 5-year Myeloma “expert.”

Anyhow, off to the local oncologist tomorrow for a talk about a bridging chemotherapy (think I mentioned that above) and to get an IViG infusion. Going to ask about my back and toes too — the name of the game right now is DO NOT FUCK UP YOUR QUALIFICATION FOR THE CLINICAL TRIAL. And make it through, one step after the other, somehow.  I feel like we’re coming to a crescendo with all of this, somehow. That one way or the other life with be altered permanently in the next few months. It’s chilling, but then again as low as I feel most days I welcome it.

Jesus, ouch dude.

In a feat of typical Rich timing I managed to pick up a cold right before my IViG infusion yesterday when my immune system was at its most compromised.  On the plus side the cold seems to be moving pretty fast.  The negative?  every time I cough it feels like someone is stabbing me in the lower back.  Was up almost every hour on the hour last night coughing and then muffling a scream into my pillows.  Really wish I had some idea of what in the Hell is going on with my lower back because I have never felt pain like this before.

Oh and it was a damp evening thanks to the night sweats, which I detest. Pretty sure that’s coming from the Velcade portion of the PACE chemotherapy regimen — I used to get that all the time during year one when I was doing weekly Velcade shots.

So yeah, pretty miserable night, but I made it to work. Stoned off my ass on Oxycodone and DayQuil, but here nonetheless.

I met with my oncologist yesterday as well and, thanks to my numbers continuing to improve on this VTD-PACE regimen, we’re doing round four.  I also signed the paperwork at that meeting for my collected stem cells to be delivered here from Arizona as that is still the plan (a stem cell transplant) following this fourth cycle of PACE. I’m still concerned about the six week break between the end of round four and the start of the stem cell transplant, but sounds like there’s nothing to be done about it — Dr. Matous wants me as recovered as possible before I walk into the transplant.

Here’s to hoping that my numbers don’t go nuts like they did at the start of the year when I had to take a few months off chemo for that stomach surgery.

 

Many worlds I’ve come since I first left home.

Tomorrow I go back into the hospital for a week for the third, and most likely final, round of VTD-PACE. I’m not worried about the hospital stay, although that’s a pain in the ass, but more what comes after.

This weekend, my wife and daughter went up to Breckenridge with my wife’s parents.  I stayed at home, not really in any shape for outside activities or prolonged sun exposure. I spent most of that time thinking about things, which rarely is a puppydog and rainbows activity for me. And missing my daughter.

I dunno, folks.  Although I hadn’t even really recognized it, last week was my four-year anniversary of this nightmare.  I wish I had something to celebrate besides simply surviving, a verb that still seems so alien all these years later.  It seems to be the key word, though, especially this year and with these treatments.  Yeah, I’m still around … but in pretty rough shape.  I find it difficult, in fact impossible right now except in an abstract way, to even see the light as it were.  No matter how I slice it I’m staring down the barrel at several more hospital stays, doctors visits, tests … the list never seems to end. We’re off the rails now and in the “here be monsters” part of the map where the decisions are not written in stone like they used to be, and the choices make the earlier therapies seem like fun by comparison.

Another round of this?  Unlikely, but possible.  Dr. Matous never does four of these and rarely three, but this chemotherapy is all that has really made a dent in the last year so three it is.  A stem cell transplant next?  I’m at a zero level of excitement for that, but if it’s what the doctor wants I’ll certainly pay attention — I didn’t spend all the time and money to get top of the line healthcare to just ignore it.  CAR-T?  After the SCT, but apparently that’s got some serious hospital time as well.

If I think too long about it all I’m overcome with … well, I dunno.  It’s not depression, although there’s certainly some of that mixed into this.  What’s the word for an overwhelming sense of “fuck me running?”  Not sure.  I’ve felt for a while now like things have taken a turn this year, not necessarily in a good direction, and this is more of the same.  I think I’m in that stage a lot of patients seem to get to at some point where the treatments are so intensive both physically and time-wise that I’m rebelling, at least internally, at the toll it’s taking. I’m exhausted all of the time now and I have lower back pain so severe that even a double-dose of Oxycodone combined with some of Colorado’s finest isn’t getting rid of it, making getting up from a chair or couch an adventure in pain.

I have an MRI scheduled for my back tomorrow, and on the bright side, hey, I’ll get the good drugs to deal with the pain.  Generally when you answer the “what’s your pain at” with tears and a minor scream when you get out of the hospital bed they give you the good stuff.  So helloooooooo Fentanyl, it’s been too long.

I can’t seem to get back to a more carefree, happier headspace lately. I blame the steroids first and foremost, but it’s not as bad as it was before — perhaps because I know what to look for now?  I just bite my lip and boggle at the things my brain comes up with (bitter retorts, nasty replies, constant critical comments, etc.) and only let the good stuff come out of my mouth. But I can’t fake happy like I can fake politeness, and my emotional wall seems dangerously porous again. How do you really explain why you suddenly start crying out of nowhere when your thoughts stray to cancer and your child?  When you have to grit your teeth and clutch the armrests of your chair so tight you snap one in half to get your head back out of that particular hole?  How when most people daydream about summery stuff you’re idly pondering your own funeral?  It’s definitely a weird mental space to inhabit.

How do I understand and come to terms with the person I’ve become when the thoughts I have, as horrible as they are, come naturally?  I mentally go through a checklist of what to bring and do for this next week-long stint and without skipping a beat note to write a goodbye letter to my daughter.  A goodbye letter.  To my daughter.

Jesus.

You try it.  Maybe it’s just me but I don’t know how to deal with things like that without opening the floodgates.  Which is a good look on top of the bald head and hairless face, let me tell ‘ya.

But yeah, as my health has been much more precarious this year I’ve realized if I were taken suddenly there’s nothing but scattered writings and pieces — I need to know there’s more, a direct connection.  So I have some writing to do.

That should be fun.

Decided I want the Dead’s “Brokedown Palace” played at my funeral, although not in an obnoxious “OK everyone listen to this song” way. Just on loop until the festivities, as it were, start.  Probably quote this in the aforementioned letter as well.  Something powerful about this song that has always made it stick in my mind:

Fare you well, my honey
Fare you well, my only true one
All the birds that were singing
Are flown, except you alone

Gonna leave this brokedown palace
On my hands and my knees, I will roll, roll, roll
Make myself a bed by the waterside
In my time, in my time, I will roll, roll, roll

In a bed, in a bed
By the waterside I will lay my head
Listen to the river sing sweet songs
To rock my soul

River gonna take me, sing me sweet and sleepy
Sing me sweet and sleepy all the way back home
It’s a far gone lullaby sung many years ago
Mama, Mama, many worlds I’ve come since I first left home

Going home, going home
By the waterside I will rest my bones
Listen to the river sing sweet songs
To rock my soul

Going to plant a weeping willow
On the bank’s green edge it will grow, grow, grow
Singing a lullaby beside the water
Lovers come and go, the river will roll, roll, roll

Fare you well, fare you well
I love you more than words can tell
Listen to the river sing sweet songs
To rock my soul.

Yes I listen to the Dead AND metal that makes even metalheads cringe at its heaviness.  The 4,000+ songs on my phone are an exercise in schizophrenic music habits.

Anyhow I’m just scrapping the barnacles off the soul here and preparing myself for the hospital stay, so sorry for the negative spiral.  Sadly I actually had something I was going to end with here that was positive, but of course chemobrain ate it before I could get fingers to keys.  Sigh.  Well one bright note, the GOP has failed to destroy our broken but somewhat functional healthcare system, so at least my Twitter feed will go back to cancer-related stuff instead of the incessant political Tweets.

Little victories.

See you in the hospital.  I’ll be the one eating a Chicago dog with a mustard stain on my hospital gown.

 

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.

“Good Morn– ” *SLAM*

Some days you just KNOW what’s coming.

So all of those chemotherapies they gave me as a cocktail from Hell last week? Pretty sure the side effects are kicking in today.  They certainly are kicking the crap out of my blood counts:

  • White blood cell count: 0.9 (4.50-11.00 10^9/L)
  • Red blood cell count: 2.34 (4.4-6.0 10^12/L)
  • Hemoglobin: 7.2 (14.2-18.0 g/dL)
  • Hematocrit: 21.3 (40.0-54%)
  • Platelets: 27 (150-400 10^9/L)

For those who aren’t hematologists, nurses or just one of us dying from a blood cancer, it’s the hemoglobin that, at least for me, has been so low as to necessitate a blood transfusion.  Seven is the threshold but there’s wiggle room, such as when you were at nine-something two days ago.  I knew something was up this morning when I woke up exhausted after a decent nights sleep. That’s always such a bummer … bad enough to have to wake up in the first place when you don’t want to get out of bed, but on top of it immediately experiencing the low blood count version of this:

giphy

That kills me every time.

So to back up a bit, I had an appointment today for labs and more Velcade.  My assigned nurse in the infusion center said that I didn’t actually need labs since there were some done two days ago.  I didn’t think that was correct, given expected blood count drops from the VTD-PACE, but I specifically wanted to see my hemoglobin in case I was right in thinking my exhaustion was being caused by low counts so I requested the test anyways.  Sure enough I needed blood, and there’s a lesson in there about being proactive with this stuff.  After four years I’ve become fairly well attuned to what my personal meat popsickle is going through.

Always be your own advocate!

Unfortunately it’s kind of a Pyrrhic victory. As in “great, you were right!  Now you’ll be here the rest of the day.”

Oh well.

While in the infusion room at CBCI I noticed a FELLOW patient of my doctor that I had spoken to briefly once before.  I jotted down the blog address and gave it to him, a returned favor for a business card he had given me the previous encounter.

So for obvious reasons — well, at least obvious if you read the previous blog post — I’ve been thinking about the loneliness of cancer a bit lately.  It just seems like Myeloma itself is forcing an isolation on me … which probably is about as clear as mud.   Hmm … OK, see if this makes more sense: so there’s a 1 in about 143 chance, or 0.7%, that you’ll, err, catch?  Do you catch cancer? Well whatever. So it’s 0.7% you’ll come down with a terminal case of ze Myelomas.

But then what if you’re not even in the target demographic? I know this disease is striking at younger and younger folks but when I’ve been to three different top level Myeloma centers I’m the youngest in the waiting room by a good 20 years.  Minimum. I still would have yet to actually meet (and become great friends with) another person with Myeloma had it not been for a mutual friend.

Of that population, according to a slide I saw from ASCO earlier, only about 33% are online with some form of social media. So yeah, there’s only a handful of us that are easy to find.

Being singled out in society, even if quietly with a rare disease, is a weird feeling.  A VERY weird feeling.  Like last person on the planet feeling.  Not knowing anyone who can really 100% sympathize, no fucking clue how you got this … I mean humans are no different than the moles you hit in a whack-a-mole game — safety is with the group underneath. It’s written into our genetic code.  Danger is outside the herd, through the holes.

Nobody should have to fight alone.  Especially this fucker of a battle.  It’s just a bit too much to ask of someone — a lot too much, sometimes.

Anyways, hope if you get here, my friend, you know the door’s always open — email, Twitter, whatever.  Nobody has to go through this shit alone.  And I still have every intention of taking one of your classes!

Sat down with the wife last night. She says she’s still committed to our efforts and that, as I relayed Tuesday night’s fun and my thoughts this past week, we have “different recollections” of that night.  Time will tell.  This is another reason, however, why I truly feel some sort of social worker HAS to be involved with cancer patients. The side effects of these drugs can be overwhelming if you don’t know it’s coming.

What else … oh, the big ASCO meeting is going on in Chiraq this weekend. Oddly enough I didn’t know that (took about a week off social media this past week) until I talked to a cousin who is on his way there as part of the industry.  Someday I would like to go to something like that — although I have a feeling the Adult Entertainment Expo or the local Cannabis Cup has vastly cooler giveaways, at least if you are travel planning based on cancer-related life expectancy.  Plus you can get herpes easily at the AEE (there’s probably a booth that gives it away), although I’m not going to rule that out at the other two.

Either way I’ll re-Tweet (God, I swore I’d never say that phrase out-loud, sigh) anything interesting that us plebes can understand on Myeloma.

Hmmm.  You know that’d be a neat business to own, come to think of it … a travel agency for the Doomed.  Could call it “Fuck It Travel.” High-dollar vacations for people who decided their kids were too shitty to leave anything to and want to blow the savings on one last hurrah.  I like it.

And on that note, I’m done. And as usual, I apologize for what I’m doing to this unit of new blood tonight.