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.

No longer playing by the rules.

I’m torn by my attitude lately. On the one hand I’m wearing the masks outdoors like some stock video of Chinese city workers commuting on CNN, hand sanitizer in a pocket and avoiding all sorts of immunodeficient evils that you are supposed to avoid after car-t treatment or a bone marrow transplant.

But there’s this other part of me that looks at my daughter and thinks “fuck that, and fuck that life.”

I did that while still in Nashville, going to the zoo with Ari. I wasn’t going to go and was ready to just sleep all day but she seemed so sad when I tried to explain it. Little girls just have that guilt trip voice down pat, where you feel like you are some barbaric monster about to ruin their lives and creating a moment they’ll be telling a therapist about somewhere down the road. So I put up a tiny bit of resistance and then just said ‘what am I doing? Screw it, I’m going to the zoo with my daughter today” and she just lit up, jumping around yelling “daddy’s coming to the zoo! Daddy’s coming to the zoo!”

And outside of fucking up my shoulder when I accidentally fell down, we had a wonderful day. Maybe it’s the reason I ended up back in the hospital for a few days with pneumonia, I don’t know.  But I know I’d make that same call again in a heartbeat.

I also went swimming with her a few times in the hotel pool.  You should have seen her eyes light up at that prospect. My wife was super surprised as well, but as I’ve said I changed last year. Patient or not, deathbed or not, I’m tired of watching what remains of my life coast by from uncomfortable beds and zombie’d out from the painkillers. Fuck it. I want to go diving soon as well, although my immune system is not ready for that yet (or even close).

This car-t treatment may or may not have worked.  We got super-preliminary numbers last Friday that looked decent, anyways: on May 22nd last month I had a m-spike of 3.02, which by June 15th (car-t cells infused on May 29th) had dropped 25% to 2.27.  I should get solid preliminary numbers this week or early next when they’ve processed the bone marrow biopsy from Wednesday (ouch!), skeletal survey, urine and bazillion vials of blood (I posted a pick on Instagram and Twitter).

My weight has fallen again, although I expect that to rebound as my appetite returns (assuming it will). The food at Sarah Cannon sucks syphilitic monkeys nuts (sorry, Sarah Cannon “chefs”) but the stuff was almost inedible. I ordered out when possible but wasn’t super hungry, and after I got out my favorite places were inaccessible due to my immune system (salad bar at a Brazilian steak house, sushi, etc.).  If that doesn’t make sense, while you are immunsuppressed you aren’t supposed to eat raw food, food that’s been sitting around or vegetables and fruits that haven’t had to be peeled (i.e., may not have been washed properly).

Ah well.

Anywho, outside of gastroenterological / immune system concerns … I’m sick of existing like this. And that’s really what it’s been … just an existence, a survival.  This having myeloma ridiculousness isn’t even living. And I’m tired of this disease not only dictating most of my life but getting to weigh in on my relationship with my daughter as well. Having her out in Nashville the past few weeks, taking her to Jamba Juice every morning I could and sneaking in some Dunkin Donut trips too, talking constantly, etc., made the whole experience a pleasure instead of a pain in the ass. Except literally (read: bone marrow biopsy). I even Jerry-rigged the TV in the suite to allow my laptop to work on it so she could watch her shows on Netflix and my Plex server in the hotel. This whole deal has brought us closer even though towards the end you could tell she (and my wife) had had about enough of living in hotels.

Definitely not looking forward to dealing with my parents when I get back into town. They didn’t even bother visiting while I was in Nashville for the five weeks we were in town. On the other hand the programmer and personal friend at our family company has come out twice from Florida, two friends of mine from Colorado came out for several days to hang out, and even my wife, who I’m still in a rocky place with, came for the entire 3 weeks I was out of the hospital (1 before and 2 after, ending when we left together). I had cousins twice removed emailing and texting. Yet I have heard nothing from my own parents.

So yeah, that should be a fun reunion.  Yay for family businesses.

I wanted to thank an online friend here as well … Pam, thank you so much for the card. Not only did it make me laugh but I feel like an ass for not saying “thank you” earlier … found your opened card in my paperwork file in my computer bag (where I saved the important stuff from Nashville so I wouldn’t lose it) today and realized chemobrain had struck again and I hadn’t sent you a personal thank you.  So from the heart, sincerely, thank you!

Anyways, back to what I was talking about. Going to the zoo in my masked face did turn out to be a gift-in-disguise in another way as well, as a wonderful woman walked up to my wife and I and asked if I had had a transplant. Turns out she has myeloma too and we talked for a while, promising to keep in touch with each others’ blogs. This has been a trip for things like that. Also although she still hasn’t added me as a friend (lazy fucker) on Facebook to stay in touch, I had this amazing nurse named Kristen (sp?) at Sarah Cannon with whom I really had some good talks with. She started reading my blog, which never fails to humble me, and I felt like I made a friend.  I think she’s one of the few that already gets it but understanding your patients is sooooo important, especially in oncology. She’s also one of the top healthcare providers I’ve ever dealt with, so hopefully we get to stay in touch.

Having done this now for 5 years (cancerversary is July 13th) you realize that you don’t meet that many healthcare providers that actually give a shit.  Sure, most care to a degree, but few really see you as a person. I get that, I guess. I don’t think I have a strong enough emotional wall (even before I was gifted with the true joy that is myeloma) to deal with being a healthcare provider, so I understand keeping your distance. That’s why I have so much respect for those that you can tell actually care whether you exist.

Feel like I had a ton more to write about but I’m at a loss at the moment, drained from travel and the stress and everything else recently. Being back home now (well for less than 24 hours) is of course surreal after being gone for just over five weeks, especially with the scanxiety of the car-t initial results as I try to get all of the receipts collected and organized for insurance companies and for the first night in 3 weeks haven’t had to sleep on a sofa bed (Amy and Ari got the comfy bed, I martyr’ed myself much to my and my back’s chagrin). Did this work? Or are we at the same place with lower numbers? Why do sofa sleepers suck so much? And why the fuck does Nashville water smell like the 6th ring of Hell to me?

Seriously, it’s gross. Like dead fish gross. Can’t tell you how happy I am to be back in the land of water that doesn’t smell like ass.

I dunno. My mind is barely functional right now and I’m walking around like an automaton with a limp just going through the motions. Productive but not really here, you know?

Well fingers crossed. I did the trial, fought the fight for future myeloma victims if you want to look at it that way. I hope we’re all happy with the results.

 

CAR-T Begins.

I mentioned it on Twitter and Facebook but haven’t had a chance, or to be honest the desire (Pandora’s Box issues) to sit down and write this. But I got the call and I got into the expansion trial for Celgene/Bluebird’s bb2121 clinical trial.

Apparently I actually got in in January, but because I was receiving radiation for those tumors in my back and hip at the time the nurse in charge didn’t even mention it, just asked me some questions.

So I flew out to Nashville last week for the initial testing.  I went by myself, which was a mistake — it was all just a little too much, too real. I’ve been dealing with so much of this cancer alone but I just don’t have the mental and physical strength anymore, especially after the last few months.  I hadn’t slept the night before I flew out and my wife offered to drive me to the airport that morning since I was in such bad shape. Spent most of the trip just mentally trying to push myself to the next meeting, the next test, etc.

I had a TON of blood taken, got a new skeletal survey, met with the coordinator several times, signed all of the paperwork, met with the apheresis folks who will draw my T-Cells this coming week (I’ll get to that), and then on the 10th I had a bone marrow biopsy. I’m still hurting from that one — and it’s worth mentioning that if you drive yourself to one of those they won’t give you Ativan and Morphine, just a local.  So after having what felt like most of my pelvis clawed out of this tiny hole in my beltline I got to hop behind the wheel, drive to the airport, sit a few hours and then sit on a plane for 3 hours. One of the worst days I’ve had in a while.

And the week since … I still can’t bend over without extreme pain.  On the bright side my back isn’t bothering me as much, heh. Not like I could tell.

This Tuesday I fly back out to Nashville for a meeting at the clinic and then the next day (19th) they draw out my T-Cells. My wife agreed to come with me this time — like I said I just can’t do this stuff alone anymore. I was seriously losing it in the hotel last week and about the only lifeline I had was a very close family friend who tried to fly out to stay with me — talk about friendship. I feel like my mental and emotional fortitude has just crumbled, especially lately. I felt lonely sometimes (well, a lot) when I’d have to go to Scottsdale alone for the Mayo Clinic visits but I felt stronger back then, physically and otherwise. Now I feel infirm and some days each step seems like it’s just one too many to take. Hard to explain.

But like I said this time I have my wife with me, someone to hold my hand through this stuff.  I’ll be honest (when aren’t I), I’m fairly scared about all of this. New techniques, no idea of long-term effects.  So the way it works is they harvest my T-Cells, and then send them to a lab for 2-5 weeks to be reprogrammed to fight the Myeloma. I go back to Nashville then, do more tests and 3 days of chemotherapy, and then enter the hospital. They reintroduce my reprogrammed T-Cells and then I’m in the hospital for two weeks while apparently all hell breaks loose — your body fights against the new cells, which can be pretty dangerous. After making it through all of that I’m out-patient in Nashville for 2 more weeks in a hotel and then I get to come home, but I’ll be flying out there once a month for years apparently.  Pretty intense.  Too intense if I think about it too much.

With Ari still in school just the logistics of being in Nashville for those 5 weeks are going to be hard. The study, amazingly, pays for my hotel while I’m out there but not for the two weeks I’m in-patient. That’s a huge relief as these last-minute plane tickets have been breaking the bank. But ideally I’d like someone out there all the time, or at least while I’m out-patient (well I have to have someone when I’m out-patient, I’ll require a caregiver). I have no idea how to juggle that but we’re back-burnering that problem until we find out when the dates actually are. The bone marrow transplant I did in Scottsdale was much easier as Ari wasn’t in school then, so I just got us a condo for several months and we basically moved out there with her step-father coming to help for a month.

Who has offered to help again, because unlike my folks he seems to actually care about me. Sigh.

I feel like I’m standing at the foot of Everest, unequipped and unprepared, wondering how the fuck I’m supposed to climb it. I had hoped that something like this would have people coming out of the woodwork to help, emotionally and to just take some of the load off, and it has in some quarters, but those that should have been closest to me (namely, my parents) are being awful.  Really awful.  And it’s fucking me up worse than I like to admit.  I just don’t get it, or them, but it hurts. My anxiety level is at an all-time high, although the suicidal thoughts and hardcore depression are not like they were when I was taking that Ambien. I mean I’m depressed, for sure, but not like that.

Although I have found a new trick lately … two Ativan and a Xanax before bed.  It doesn’t knock me out but I sleep really well.

I know this is sort of all over the place. I’m all over the place today. Had a really bad day thanks to my folks yesterday, not feeling great, and like I said I’m scared of all of this. Not like 5 years of chemotherapy wasn’t “serious” but this feels, I dunno, SERIOUS. Scared of fucking it up, scared of all of the travel, the results, being away from my comfort zone, my daughter, etc.  Rough times.

People ask me a lot how I do “this.” It’s the same thing as thinking, like some do, that a cancer patient is some sort of hero or something for not just laying down and dying immediately. They express wonder at how I still go to work, etc.  I remember thinking about this when I landed in Nashville last week, exhausted, with a long walk to the car rental garage, and just looked down and focused on putting one foot in front of the other one when I really just wanted to lay down right there. That’s my life, really. When in doubt, forward motion. It’s not heroic. Maybe it’d be more heroic to just give up and say fuck this, to stop ruining everyone elses’ life around me with this fucking disease.  I dunno.

I just keep moving.  Or trying to, anyways. So next stop, Nashville. And although she doesn’t read my blog (don’t ask), thank you, Amy, for coming with me to hold my hand.

2018.

The holidays were such an unmitigated shit-show thanks to family drama that it really hasn’t been until the last week or so that I’ve felt centered enough to where I felt comfortable opening this Pandora’s Box. That may sound like a weak excuse since everyone seemingly has family drama around the holidays, but if it helps your perspective I actually had to consult an attorney over the shenanigans this year.

Seriously.

So yeah, most of the little energy I have just went into surviving December. And scarred and battle-worn I’ve fallen off the cliff into 2018. Here’s to hoping it’s not the health nightmare 2017 was or I don’t see me making it out of this one — I had to do some paperwork recently for our disability insurance policy (which is apparently garbage), and here’s my list of hospitalizations during the past year:

Admission Discharge Procedure
1/18/2017 1/23/2017 Colon Resection
4/19/2017 4/23/2017 Chemotherapy: VDT-PACE
5/22/2017 5/23/2017 Multiple Myeloma Complications
6/19/2017 6/23/2017 Chemotherapy: VDT-PACE
7/19/2017 7/23/2017 Chemotherapy: VDT-PACE
8/13/2017 8/20/2017  Chemotherapy: VDT-PACE
9/5/2017 9/9/2017 Multiple Myeloma Complications
9/18/2017 9/29/2017 Pneumonia Treatment
10/2/2017 10/5/2017 Kyphoplasty
10/10/2017 10/15/2017 Multiple Myeloma Complications
10/17/2017 10/27/2017 Drain of Pericardial Cavity

Fun summer, that.

Anyways a few disconnected ramblings to pour out this time, so be forewarned.

I believe the last time I sat down here we were in a holding pattern to find out what Dr. Matous wants to do with me. The answer is CAR-T, but the question becomes which protocol and when. There are a few things complicating this issue, none of which I have an easy answer for:

  • The big news out of ASH was the anti-BCMA CAR-T treatments, specifically Bluebird Bio’s. Unfortunately CBCI does not have that available and won’t in the foreseeable future. They will have a two-target anti-BCMA trial opening up around the second quarter of 2018, but there’s (a) no guarantee I’d get in and (b) it’s a dosage trial, which is more experimental than I’m comfortable with.
  • Right now I’m not on any chemotherapy and we’re hoping my numbers stay stable while we figure out what to do next. Unfortunately that’s not the M.O. for my cancer so every two weeks I go in for bloodwork, and while relatively stable my numbers are creeping up. Talk about “scanxiety” … I’m not even sure what we do if they start really moving.  Need to remember to ask that tomorrow, actually.

Tomorrow … tomorrow I’ll find out more then as I go in for the monthly IViG infusion and talk to the doctor. This is pretty nerve-wracking at this point as I’m honestly not sure what to do. I’m going to set up an appointment at the Mayo Clinic with Dr. Mikhael to get some more input as well, whom I haven’t seen in over a year — perhaps he’s got some ideas.  I feel like I am definitely experiencing side effects of the cancer, however — my fatigue level is abnormally high and getting worse, and there’s something seriously wrong with my internal thermostat. Should have some preliminary answers about my temperature problems tomorrow as well.

In other health news I had an MRI last Friday for my back — I’m still having a ton of back pain and it seems to be coming from much lower down my spine this time. I should get an idea of what’s going on when we go over the results tomorrow but I have a hard time buying that there’s not something seriously wrong given the pain level. Early last week I took all of my pills out one morning, went to the kitchen to get more coffee to down them and then apparently had a chemobrain moment and just left them un-swallowed on my desk.  By lunchtime without the daily 40mg of Oxycontin on board I thought I was going to fucking die from the pain.

What else … oh! Unusual for me but I’m going to start doing reiki, or at least trying it, next week. One of the things I learned at that Myeloma support group I went to last month was that there’s a group here in Colorado that donates 12 weekly reiki treatments for free to cancer patients, so I figured I’d try it. Can’t hurt, right?

Lastly, I participated in a brain tumor Twitter chat last night which ended up being a double-edged sword. Normally I’d skip something like this but the topic was on advanced care planning and when your sub-group of cancer has as small an online footprint as Myeloma does, you take what you can get for support. Interesting chat although it stirred memories and a few things on my mental to-do list I didn’t want to think about last night, enhanced I’m sure by enjoying a bowl right before the chat started.

It does remind me, however, that I need to put together my “Hey I just died, here’s what you need to immediately do” note for the lockbox. I’ve been avoiding that one and doing so knowingly but it needs to be done. A few passwords and instructions and then I can cross it off. I’ve just been so depressed for so long due to the holiday season and how bad it got I just couldn’t, you know? But it’s time and I simply don’t have the luxury, certainly not after how bad my health got last year, of procrastinating — that’s not fair to Amy or Ari.  Sigh.

That’s about it for now. I’ll post at least a quick update tomorrowish once I find out more about the back and the rest of the doctor’s appointment. Happy New Year to you folks and hope 2018 finds you in better health than last year.