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.

 

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.

Here we go (again).

Sunday morning I take off for Nashville for the “big” trip.  I’ll have a week of evaluations to make absolutely sure I’m eligible for the study and to establish baselines starting Monday, followed by 3 days of IV chemotherapy (fludarabine and cyclophosphamide) to remove some of my own immune cells and make my body ready to accept the CAR-T cells.  I go into the hospital the next day (the 28th) and on the 29th I’m given my re-engineered T cells back.

At that point I’m GMO. There’s an irony to that, for those who know my wife and I, that I find funny. About the only funny part to this, really.

After about two weeks of being monitored in-patient, I’m released from the hospital but have to stay in Nashville for another two weeks or so to be monitored regularly for side effects. Assuming everything’s OK at that point I get to come home.

I don’t know how much I want to get into here today (guess we’ll find out).  I’m having what I call an “emotional” day today, where everything is making me sad. I’ve had a horrific week or two with my family, truly awful, during which I’ve penned multiple far-too-long emails begging them to have a heart and understand what I’m going through. On top of that the reality that I won’t see my daughter for three weeks at least is kicking in and it’s killing me. I’m feeling the pressure of this clinical trial and that I might fuck it up somehow after all of this effort on so many people’s parts, or that it won’t work and it will end up being the final disappointment in a long chain of them.

When I did my bone marrow transplant back in 2014 I not only had my wife and daughter out in Scottsdale with me but my wife’s step-father as well. I felt taking care of, and I knew if something went wrong or I just needed a hug or something I could just pick up the phone. Now, going through this nightmare, I’ll be alone while in the hospital. I’m stressed about that as well but more just saddened by it.  I mean what if something goes really wrong?  I won’t even be able to give a last hug or say goodbye to my daughter.

Yeah, and on that note I think we’re all done with this entry before I dig an emotional hole I won’t be able to get out of.  I’ll update here as much as possible while in Nashville, but for more frequent updates please keep an eye on my Twitter feed instead.

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.