Mental Sewage.

Another day passes.

I was supposed to begin the second cycle of my current chemotherapy today (Cytoxin, Carfilzomib and Prednisone) but I’m so beat up that Dr. Matous is giving me a week off.  We’ll find out mid-week how effective the first cycle has been.

I’ve been withdrawn, well, really in a lot of ways since I got the bad news about my CAR T results from Nashville.  I hadn’t realized quite how much hope I had put into that whole deal until it came crashing down. I know I’ve harped on it here a few times but I keep coming back to it, the day hope died for me. Now I just feel like I’m a one-person time-bomb who can’t see the timer. Place your bets, kids, there’s plenty of squares left.

I set little goals for myself, morbid as they are. I had to live through a week ago because I closed on a refi that completely got my family out of debt, so there won’t be any hijinks when I’m gone. I have to live through the 5th of September because I redid my will and all of the trusts I just set up for my family need to be signed for. There’s more, a mental list, but I’ll be honest — they don’t go too far out. I feel too fragile for that and certainly that has played into a despair I can’t shake.

I’ve only slept well in the last month the last two nights thanks to taking 50mg of Benadryl  at night (with a Xanax chaser and a toke or two some nights). Probably not the smartest chemical diet but there’s this weird place you get when you’re terminal where safety just gets put aside. Seat belt? Laugh. The only reason I wear one anymore is because the beeping annoys the shit out of me. Mixing Opiods (Opiates? Whatever, screw your accuracy)  and Xanax and pot? Well, maybe one of them will knock me the fuck out so I can stop thinking and get 4 hours of sleep. Yes how terrible it would be if I didn’t wake up and cheated cancer of slowly eating me alive for another unspecified period. Or hell, just so I could GET to sleep and shut my goddamn brain off for 10 seconds.

SO I CAN STOP THINKING GOD DAMNIT.  CAN’T YOU UNDERSTAND?

My brain is my worst enemy. Sure the cancer’s killing me but my brain is running the Howard Cosell constantly (not with his accent, but you know what I mean). It’s ruined me, and really THAT is the battle with cancer that I’ve lost. I mean you get cancer and you’re fucked, we all know that. At some point you’re just going to lose, odds-wise. But what makes is truly miserable are those voices in your head. My personal favorite is the constantly-repeating image of my daughter screaming “I want my daddy!” after I’m gone. Over and over and over and OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER … get the point yet?

I don’t know how to put that aside. Over five years of this disease slowly sapping away my life, my sanity, my personality. It’s not really how I wanted to be remembered, a shell of a human, but it seems like a one-track destination. I’m zombie’ing days away just trying to live another day.

And for what?

Well, for who, you know that Rich. But at what point do you become the albatross you used to write about? To everyone, to everything you know?

I feel like her defender lately, as if I suddenly understand her better. We’ve built this bond recently. Of course that can be a double-edged sword.  I asked my daughter last night why she told her mother she didn’t want to go for a walk with her and she told me “because mommy didn’t break her spine, or spend all that time in the hospital, and I didn’t want you to be lonely.”

If she saw the tears she didn’t say anything. I’m so glad I got cancer so I could have moments like that with my child.

Anyhow her mother is frustrated with her and a little short-tempered lately. Ariana is in a “phase” I guess. That’s one of the other fun problems with cancer the pamphlets don’t tell you about, kids. See our daughter’s therapist believes some of her acting out comes from my illness. So I get to see, firsthand, how I’m fucking my own kid up. I can’t tell you how awesome that is. Even though I know some of it is in fact just a phase.

But she and I are closer lately, anyways. Mostly because  I sneak her Blow Pops that I order on Amazon and hide in my desk. What the hell do I care? At least she can remember a daddy that broke the rules when her mother was gone to share a sucker with, I guess. I’m fighting for the inches now, praying she’ll remember this or that, or not this or that as the case may be. It figures that the exhaustion from the drugs and disease is so strong, so that I can’t even fully  enjoy these last moments. Not with dad, the gimp. He can’t feel his feet anymore or get out of bed half the time. Quite the epitaph.

Ironically my weight is at a nice spot now, although between the fact that I shave my head and the gaunt look to my face lately I feel like a double in Schindler’s List. I just don’t feel hungry anymore, except for the frozen fruit I take to bed at night as a snack. It scares me sometimes because I know I can’t heal without sustenance, but I just don’t want anything. Hell I’m taking a Zofran a day right now just to combat nausea, the last thing I want to do is eat.

So none of my clothes fit and I look like an idiot now. *thumbs up* I can’t even wear stuff I wore on my honeymoon without a belt, which is impressive (and shows you how often I throw shit away, since those haven’t fit, since, well, the honeymoon). On the bright side I can take my pants off without unbuttoning them. On the not-so-bright side if I don’t cinch my belt tight enough they do that when I’m walking into my office building.

Maybe I’m just pissed because I’ll be dead before Cyberpunk 2077 comes out. You never know with me.

A Third Option.

So last week I sat down for an office visit with the nurse practitioner, Megan, from my oncology team. We talked about the various problems I’m having, from the full-body pain to the sweats/chills, the severe depression, you name it. At one point she asked if she could give me a hug which is about when I broke down. She also told me that for what it was worth, if I were gone (we were talking about suicide) that I would be missed at CBCI. It touched me. Megan is one of those special medical personnel that actually cares and it comes through every time I talk to her.

She also made good on her promise to try to solve all of these problems, emailing me an action plan and calling me with Dr. Matous on the line later in the day. So here’s what we’re planning on in no specific order:

  • Increasing the hydrocortisone steroid back up to the original dosage to see if it helps with the temperature issues. Which, I’m happy to say, it seems to have had an impact with. Still sweating for no apparent reason at times but it’s not as frequent, and I’m hoping that trend continues. That really was driving me batshit insane.
  • Increasing the Oxycontin dosage from 40 mg tabs to 60’s but only after we give the steroid change a chance to see if it has an affect. Since it has I still haven’t filled that prescription.
  • Lighting a fire under the social worker’s ass I talked to a few weeks ago that never got back to me. By the next day I had a spreadsheet of all of their recommended providers and have already picked a few for my wife to review (going to deal with our marital issues first). Score one for Megan.
  • Check my testosterone level — presumably I’ll hear about this in one of my next visits.
  • Schedule another MRI of my spine to see why I’m still in pain.

I had an MRI earlier that day on my liver to explore what that spot was that showed up.  Turns out it is a benign liver hemangioma, which apparently is a tangle of blood vessels.  Either way she said that was very, very good news. I had no idea how dangerous liver cancer was until looking it up after hearing this (for once I skipped Dr. Google)  so I probably should have been more relieved, but at least it’s nothing serious or that needs to be treated.

I left the oncologist having obviously been crying and had several nurses ask if they could hug me as I made my way out, red-eyed. That made me feel nice, although it was hard — I have such a lack of touch in my life, and in-person caring, that it had a big impact. Not used to people being sweet to me, although I wish I was. Always have, really, I’ve just been too introverted to allow it in my life I guess.

On the way home I got a call from the oncology team with the big news — after reviewing everything, they want me to go back on chemo. One of the only drugs I haven’t tried yet, Carfilzomib, specifically. I’ll be mixing it with Pomalyst and Prednisone — it’s actually supposed to be done with Dex as the steroid but I refuse to take that again, so Prednisone it is. Nashville just isn’t calling and Dr. Matous let me know that he talked to Dr. Morie Gertz, the main guy in myeloma at the Mayo Clinic, and Gertz said the wait list for the trial I want is “substantial.” My doctor is also concerned that I still may not be strong enough for a stem cell transplant, so we’re going to try this chemo regimen.

I’m mixed on it. Part of me is glad just to have a plan, although this is going to be a pain in the ass (Carfilzomib is an IV-administered chemo done several times a week) logistics-wise. But maybe it works, you know? In the meantime there’s more time for spots to open in the clinical trials and for my body to hopefully strengthen to do another stem cell transplant. Either way I’m not in limbo anymore, and I think that status was adding to my mental distress.

On the marital front I sat down with my wife, sometimes kneeling, and worked out a plan to make our marriage a primary focus in my life if she’d give me a chance to prove I’m not the Dex-monster I became for years. Not only was she amenable but since then I can tell she’s working on it as well, and while awkward at times, we’re making progress. We had two dates this past weekend that were a lot of fun, just the two of us, and like I said above we’re going to be doing some counseling to try to fix the main problems. Either way it’s been pleasant for the last week or so and felt like family more than I recall having felt before– there have been times when I’ve felt like I was an enemy combatant in my own home and flat-out hated by my wife.

I just can’t take the cancer PLUS the realization that my marriage is dead — it made me realize I just didn’t have much left to live for without my family, and fueled a lot, I think, of the suicidal and hopeless thoughts I’ve been plagued with for so long now.  This is just too much, too painful, to go through alone or pretending, knowing you are making your partner miserable and that they were, at times, rooting for you NOT to survive. So fingers crossed.  I am trying, and that’s all I can do.

 

Maybe now I’ll get super powers.

I’m mentally numb today, just sort of going through the motions as my brain frantically tries to process the last 24 hours of my life while remaining functional.

On Tuesday I had an appointment to get the monthly infusion of IViG and meet with Dr. Matous to map out where we were going with my care. One of the things we had to discuss were the results of an MRI from the previous week since I’m still having tremendous amounts of back pain and it seems lower than where I had the L2 kyphoplasty. So he hands me the report and we read it together, look at the slides, and there’s one that’s troubling him (it’s all troubling to me because I can’t understand a word on the page). So he calls up radiology and gets one of their doctors on the phone to discuss what we’re looking at.

And guess what?

Turns out that the back pain is being caused by a tumor.

Lest that be the only bomb to drop on me, the MRI also showed that my spine has gone from relatively OK to a fucking dumpster fire since my last MRI (July-ish), and there’s serious concern that I’m at risk of more fractures like the one from last October. On that end we’ll be going back to monthly Zometa infusions (was quarterly) and, well, finger-crossing I guess. Definitely won’t be picking up anything heavy anytime soon. I asked if the Zometa could stop and perhaps reverse the trend we were seeing in the pictures and he said yes, so we’ll see. I honestly have my doubts — if it was working then my back wouldn’t look like it does now, would it?

In discussing CAR-T and what we wanted to do about my Myeloma, I brought up that perhaps I should go chat with my doctor at the Mayo Clinic to see if the MC is running a Bluebird Bio anti-BCMA CAR-T trial (the one I and everyone else with Myeloma on the planet wants to get into).  My local oncologist proceeded to email my doctor at the Mayo Clinic and while I can’t get into why right now, suffice it to say I no longer have a contact there (not in a bad way, just shouldn’t discuss it right now). Not really what I wanted to hear, although there is good news on that front if you’ll bear with my tale a bit longer.

So with a parting expression of concern over me from Dr. M I was released back into the wilds to process all of this.

Yeah didn’t happen.

I haven’t had an office visit go that far south since I found out my stem cell transplant was largely ineffective.  A tumor? A FUCKING TUMOR? I didn’t even know you could get a tumor from Myeloma. And on top of that I thought my disease was in kind of a holding pattern. I also thought we were supposed to be able to see the bad stuff related to Myeloma coming from miles away and react quicker, not suddenly find a tumor the size of one of my vertebrae lodged into my back.

Jesus wept.

So Dr. Matous set me up to see a radiation oncologist at Sky Ridge near my house/office for radiation immediately. Amy and I met with the doctor there on Wednesday, Dr. Mateskon, and liked him and his staff. While discussing everything I noted to him during the consult that I had developed severe pain in my left hip as well, and hey Christmas in January, the CT scan they ran after we talked showed I had another tumor in the socket of my hip.

Just wonderful.

I should note at this point, and if for nothing else than to stop this narrative from completely circling the drain, one weird but good thing happened at the radiation office. During the meeting Dr. Mateskon noted that we wouldn’t be able to do continuous days of treatment because according to a text he had received that morning from Dr. Matous at CBCI, I had an appointment in Nashville next week. Baffled, what we pieced together is that Dr. Matous came through and got me an appointment with a doctor running an arm of that coveted Bluebird Bio clinical trial at Tennessee Oncology and was going to call me later. So Sunday I fly out to Nashville to try to get accepted into that.  Crazy eh? So some good news in a sea of drowning crapmonkies.

Anyways, back to the radiation thing. So they do the CT, find that second tumor, and start prepping me to start the therapy (which involves actually tattoo’ing me so they get the placement right or something). I’ll be doing 10 sessions, the first of which I did this morning. No major physical side effects so far except I feel sort of tingly — the Zometa, which I also got yesterday, messes with me so I can’t really separate what is bothering me right now and why. I’m totally numb mentally and emotionally, however — I don’t think any of this has sunk in, really, even when I was laying on the table in that monstrous radiation machine today.

I mean I just had radiation therapy for a tumor on my spine.

What in the unholy fuck?  How did we get here?

I dunno. I’m trying not to think too much about all of this because when I do I don’t like what my brain starts doing. Like asking questions about how if we found two tumors that easily, are there any more anywhere? Why all of a sudden do I have these? Now I’m wondering if every weird sensation or pain is a tumor. It never stops. Even the Nashville thing is freaking me out. Forgetting the fact we’re talking about the bleeding edge of science on cancer with zero long-term data on survivability, etc., I’d be doing that treatment solo. I can’t take Ariana out of school … so assuming I even get into the trial, which is a long-shot, I’ll be moving to Nashville for what I understand to be about two months. That’s scary to me, and really depressing.

So many unknowns and new paths have opened that I feel like I’m not even adrift, I’m being actively overwhelmed and pulled under. I fear when some of this starts sinking in and the wall breaks down a bit.

Anyhow, that’s the update. I’ll write more if the mood hits me, something else happens (which damn near might push me over the edge, so let’s hope not) or when I learn more in Nashville.  Hasta.

Group sessions and ASH.

I’ve had one of the worst weeks of my life, emotionally, so if this is discombobulated it’s because I am. Going to avoid getting into why, however, as it’s so ugly, anxiety-inducing and just plain wrong it’s a no-fly zone for now. Been fighting off a serious depression for a week straight and it’s taking everything I have just to maintain.

I did want to get a few things down on “paper” however, as it were — this is the Magellan aspect of writing for me, this hope that in just typing I can find connections, put my life in order, discover what the REAL problem is, exorcise something, whatever.

So one thing that’s somewhat interesting is my only real-life (as opposed to online) friend who has Myeloma, Mary, convinced me to go to a monthly support group in Denver with her this past Saturday.  Specifically we went to the Denver Multiple Myeloma Support Group, which meets downtown on the second Saturday morning of each month. It was interesting, and surprisingly (at least to me) I think I’ll try to make it regularly.  Oddly enough I tend to get a bit introverted speaking about myself in person so I don’t generally do group-speak activities but I figured fuck it, I’ll get to hang with a friend I don’t get to see enough and be supportive, plus why not?

So the agenda changes depending on whether they have speakers or not but this time the meeting started with a nice meditation and then we just went around the room sharing our stories. Obviously for privacy reasons I’ll avoid relating individual’s information but interestingly for there being only eight folks this particular morning there was a wide variety of Myeloma experiences, from a 19-year survivor to someone who just got diagnosed and hadn’t even started treatment yet.

One person’s experience was actually similar to mine in that they found out via a blood test that looked bizarre to a doctor instead of some catastrophic Myeloma-related incident.  And I mention this only because the person noted while relating their story the experience of that moment where you’re hoping it’s MGUS (“monoclonal gammopathy of undetermined significance.”).  Which for the uninitiated requires a bit of explanation — so MGUS is like a precursor to Myeloma with something like a 30% chance of blossoming into the wonderful gift we know and love (no idea where I remember that stat from, so apologies if it’s incorrect).

Point is it’s what you want your blood test to say when a doctor sends you to a hematologist to explain the weird blood test results. It’s a significant moment because here you are in the hematologist/oncologist office with what feels like your last chance that this is all some crazy mistake, that the nightmare of sitting in a cancer doc’s office isn’t really happening, primed and ready for the biggest sigh of relief you’ll ever have in your life … and then WHAM. Nope, sorry, fuck-o, you lose!

It feels like I’ve walked this road for so long that combined with the chemobrain I look back sometimes and wonder at it all, especially when I recall moments like that.  More, I wish I had some pithy useful conclusion so far besides “What a long and bizarrely tragic shit show,” heh.

Onward and upward, this weekend is the American Society of Hematology’s big annual meeting.  I’ve been following it on Twitter as best I can and re-Tweeting links to articles normal human beings can understand (i.e., minimal obscure acronyms and jargon), so check the Twitter feed if you want some highlights focused just on Myeloma.  All the big hitters in the industry seem to be there, including both Drs. Mikhael and Matous, my favorites, so it’s been interesting for sure. I’m not sure what the big takeaways are from the weekend yet in terms of new stuff for Myeloma, but my list to discuss with Dr. Matous this coming week includes:

  • what’s going on in CAR-T for Myeloma
  • what is my sub-type?
  • what’s all this about doubling up on the flu vaccinations
  • what’s the story with Venetoclax for Myeloma, and
  • what are the latest thoughts on transplants. Seems like I’m seeing more and more about allogeneic (other peoples) stem cells for relapsed Myeloma victims like me as opposed to a second autologous (your own).

No cure yet though. Also if you want a wrap-up Dr. Mikhael is one of the three experts who is going to present a free streamed discussion on the latest trends in treating Myeloma on Monday night which you can watch here.

That’s pretty much all I feel like unburdening myself with right now. I have a big meeting with the Doc on the 13th where we’ll be discussing what we do next, so I’ll post again this week when I’ve had time to process.  Toodles.