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.

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.