A new low.

This is a hard entry for me to write. Normally I just expose my life without a care, a habit born of almost three decades as a journalist and then a blogger. But I’ve always self-edited, keeping the most embarrassing parts private — although granted what I consider embarrassing and others might is apparently wildly different at times.

But for example, I don’t go into my marital issues here. It’s not really the point of the blog and detracts from what I’m doing with this, which is a bit more targeted.

Today’s topic I can’t really avoid, however, so strap yourselves in.

When last I wrote I was just about to start radiation treatments for tumorous growths found in my lower back and left hip. I’m happy to report that after 10 sessions those pains are gone; however, I don’t recall ever feeling so bad, so consistently or for so long as I have since. Only in the last few days have I stopped feeling nauseous 24/7 and I’m still sleeping a ton. That was a humiliating and unpleasant experience that I hope to never repeat, although chances are I’ll have to at some point.

*shudder*

As I was saying I’ve felt like a dumpster fire since, however — so much, in fact, that I ended up going into the hospital for a few nights a few weeks ago while they ran a barrage of tests to make sure my heart was still OK, lungs, etc. I know for a fact something was/is wrong, although whether it was aftershocks of the radiation treatment or not who knows. Unable to eat, no energy, soaking everything I’m wearing multiple times a night in sweat, chills so bad I was afraid I’d break a tooth … yeah that’s not normal even for a cancer patient. But, other than needing some blood supplements everything came out negative and I asked them to just discharge me after a few nights since I can sleep at home a hell of a lot better than at the hospital and they couldn’t find anything. I’m still suffering from a crushing amount of fatigue though and my energy levels are non-existent.

The doctors did put me back on a steroid, who’s name I’ve conveniently now forgotten, in case what was causing all of this was being weened off of the Prednisone (sp?) I was taking too quickly.

No news from either of the sites running the CAR-T clinical trial I’m trying to get into. The radiation treatments put that on the back-burner for now but with that in the rear-view it’s going to be time to deal with again. I’m honestly not sure what to do at this point.

Ariana, my daughter, has been so sweet during this time. I basically have dinner, if I can stomach it, and then go lie down upstairs, and she sneaks up when my wife isn’t looking to watch cooking shows with me. Granted letting her watch Hell’s Kitchen (Hulu binger, what can I say) isn’t going to win me any parent of the year awards but we enjoy it. She has her first therapy session at the end of this month — sort of preparation for a parent dying thing that was recommended to us. I can’t really focus on that right now though because just the thought of my illness being the reason she has to do that makes me want to scream and break stuff until there’s nothing left in the world to break.

That brings me to today, as I sit here in a bathrobe trying listlessly to find answers as to where things went south and did so so fast.

Yesterday I checked myself in to the hospital for a psych evaluation. This was prompted by what feels like weeks of hardcore depression and what’s called “passive” suicidal thoughts. I haven’t had much of an appetite for weeks, I couldn’t control my emotions in terms of sadness, and I just want to sleep all of the time, to not be awake so I didn’t have to think. The guilt of what my cancer has done to those around me has become too much to bear — I can’t look at my daughter without bursting into tears, and the realization of how bad my marriage has been damaged is almost too much as well.

I also feel hopeless about my cancer, and further like my doctors have given up as well. We haven’t discussed treatment options since I was rushed to Nashville in January to interview for the CAR-T study there but I know the list and it’s a short one. So what’s really left, you know?  Just to fade away, ruining everyone’s life around me in the process (what it feels like). My daughter who can’t have a healthy normal daddy. My wife who’s dying for intimacy in a virtually loveless marriage.

At some point you just have to wonder what’s the point.

For the last five years I’ve managed, if you can call it that, my depression over my diagnosis. In reality this has consumed me, utterly. I’m not me anymore, just some cancerous automaton who can’t even figure out the motions, who wants so badly to just have a day or two of normalcy but has forgotten what that even looks like.

But I’ve maintained, even managed a smile at times. I try desperately thought failingly to maintain friendships. I work, mindlessly, to support my family since it’s all I feel useful doing. I just don’t think about the cancer thing as much as I can, which requires some serious effort at times. I mean you can’t rationalize this away, at least I don’t think so. I’ve got terminal cancer and there’s no miracle happening here for me, no last-minute save on the horizon that I can see. I’ll die as my numbers creep up and the cancer causes more things like the tumors I just had removed, and to a greater or lesser extent take everyone around me with me on the journey down the drain. At this point I don’t even seem like I’ll be busting the average life expectancy post-diagnosis of seven years, despite all of the advantages I’ve had (best medical care and insurance, caught early, etc.).

Anyhow, I’ve maintained for the most part until recently but something, or some drug change, in the last month has made this almost untenable. So yesterday my wife called the oncologist and they told me to come down for a pysch evaluation, which is a pretty scary deal. In the end I was offered three options: hospitalization in a psych facility, an intensive outpatient therapy option, or basically nothing. The thought of being hospitalized in a pysch facility frankly scares the shit out of me, nor do I think it’s necessary, so we chose option B. I’m just sitting here waiting for the call for this all to begin.

In the meantime I’ve been doing my own drug evaluation and ditched the Ambien last night — that’s the only thing that’s really changed in the last week and it’s not really working the way I wanted anyways. So far so good.  I’m emotional today, but after yesterday that’s to be expected. I feel a little lost, embarrassed, and although I’m forging ahead with it I’m dreading this phone call from the psych people.

It’s bad enough that Ariana’s daddy is dying, he doesn’t have to be crazy too.

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.

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.

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.

 

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

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

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

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

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

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

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

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

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

Jesus.

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

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

That should be fun.

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

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

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

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

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

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

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

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

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

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

Little victories.

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

 

Insert title here.

Got a few things to get into today, so let’s get to it.

First, the good news.  Although premature, I have my first results from the VTD-PACE “kill it with fire” chemotherapy, and it looks like it’s actually working!  My oncologist is stoked (his exact word), in fact:

  • M-Spike down to 3.1 from 3.9
  • IgG down to 4,718 from 5,363
  • Kappa down to 575 from 1,314

The down-from’s are late April and May #’s. Given that the latest numbers should lag treatment by about two weeks, according to my oncologist team, that’s a big deal that they are dropping so rapidly already. It’s even a bigger positive given that I tolerated the treatment at, as the nurse practitioner said, a 9.5 out of 10 — basically breezing through it. Doesn’t feel like that, but I know it could be much worse. Outside of reactions to the drugs my biggest problems have been low blood counts (which are currently rebounding, finally), exhaustion and nausea.

So yay me.

I am having one problem that hopefully we addressed yesterday. Ever since treatment started I’ve had this weird nausea and upper stomach area pain where it hits instantly when I crunch my stomach forward — how to explain this, hmm.  Like when you are sitting down and lean forward on a table or desk? I get instantly sick to my stomach to the point where I could easily throw up.  I have a prescription for a new med to take which I’ve conveniently forgotten the name of and we’re doubling the Omeprazole dosage I already take for chemo-related GI stuff (I think it’s the steroids that cause that but who knows).  Hoping this new regimen works because I’m at a desk either working or playing for most of my waking hours.

The next cycle of VTD-PACE begins on the 19th. After discussing it with Megan (the NP) and my wife I’m going to do it in-patient again. The oncology team doesn’t care either way, but since I don’t mind the hospital it just seems safer to me. I think I walk around partially dehydrated most days and I’m concerned that doing this treatment outpatient, besides just being a pain in the ass given how far I live from the clinic, might put me in danger of the things they watch out for in the hospital (including some nastiness if you are dehydrated, apparently). I also have no easy way of getting down there if, for example, I need a 4 am transfusion and I’m at home.

OK so I’m only doing it in-patient because I can order ramen and Fat Sully’s pizza.  Shhhh.

BTW I’m currently in the process of putting together a long-overdue Excel spreadsheet showing my #’s for the past four years combined with what treatments I was on and when.  I’ll publish them here when I’m done — just waiting for some data from my current oncologist.  Plus I need to launch an archaeological mission under my desk to find all of my lab result paperwork from the first year of having this disease. I’ll wear a cool hat and bring a bullwhip. And if history’s any guide I’ll smash my head into the bottom of my desk as usual and curse like a sailor.

Next up, ASCO. Although ASCO is, according to my oncologists, usually more targeted at the big four cancers, there were two huge announcements regarding CAR-T successes from this last one.  First, Nanjing Legend Biotech announced startling results from an early stage trial of their anti-BCMA CAR-T cell drug, LCAR-B38M. Thirty-three out of 35 patients (94%) went into remission with an objective response rate of 100% — crazy stuff.  As my oncologist and several others on Twitter I’ve read have noted, however, Chinese trial results need to be taken with a grain of salt.

Closer to home, Bluebird Bio and Celgene announced amazing results about THEIR anti-BCMA CAR-T therapy, BB2121.  In a clinical trial of patients no longer responsive to a prior stem cell transplant and a median of seven prior therapies, the 15 patients (out of 18) that received the highest doses had some great response rates. Twenty-seven percent achieved a complete response, 47% achieved a very good partial response and the remaining four patients were in partial response.

As noted before my oncologist’s plan is to do 1-2 more VTD-PACE cycles followed by a stem cell transplant (my second) and then a CAR-T clinical trial, so it’s really encouraging to see this.  I also learned a tiny bit more about CAR-T trials this week — if I have to travel for one, for example, I need to plan on about a month.  Basically the process is similar in protocol to a stem cell transplant as I understand it — while your blood is shipped out to have whatever voodoo magic done to it that they do, you are in the hospital doing chemo to prepare to receive it back and then watched like a hawk.

But that’s a problem for another day.

Alright, time to dip into the jar o’ pithiness. Was twisted pretty good the other night and managed to write down one of the many epiphanies I have on nights like that. Here’s what I woke up to find:

Every day I’m around is one day older the little girl crying and screaming “I want my daddy” is in my nightmares about my death from cancer and how it will impact her life.  If I had to distill why I can’t think about my future without breaking down, it’s that.  That’s it, the entirety.  I feel like no matter what I do I cannot NOT cause her pain.  Does that make sense?

And yes, I do have the skill to make an entire room go from normal to awkward in one paragraph — why do you ask? Snicker.

Ariana (my daughter) has been on my mind a lot lately — with all of her activities plus the week-long hospitalizations and “salvage” chemos these days it’s hard not to. She just graduated from preschool, which was adorable. At her pre-kindergarten orientation they gave her a t-shirt that claimed “Class of 2030.” Crazy. She’s also in a new phase where she wants to help with everything I’m doing now, which I need to remember to encourage as much as possible.

Problem is, and this is unavoidable, it obviously brings up hard emotions as well. You have to understand my mindset.  For example there’s a new video game coming out in November that I skipped pre-ordering because my first mental instinct was to ask if I’ll even be around this November … pretty sure I will be but this is how I see the future beyond a few days out. I want to be here in 2030 to see her graduate, God damnit. I want to teach her to drive, be her best friend when she has bad days in school, and help teach her algebra.  I want to make her feel better about having to have braces, and share with her my favorite music and movies.  I want to take drum lessons with her, and most of all go on dive vacations with her.

Lately we’ve been doing duets of Disney tunes, mostly the Moana song “How Far I’ll Go.” She sings it all the time so I learned it on guitar the other night so we can play together. I love this but it breaks my heart too, you know?  Maybe she becomes a famous singer someday — but I won’t be here to see it, most likely.  That’s the problem with cancer.

Oh and yes I know there’s a 4-year-old and her daddy who’ve become internet-famous doing this, BTW. Ariana sings better than that girl and I seriously doubt her dad has anywhere near the Iron Maiden collection I have, so screw them and their infinite cuteness and talent.

Seriously, though, I just hope she remembers those nights we sat on the couch and how I smiled at her, you know? Maybe someday she’ll understand that smile and the tears that I was trying to hide.

All the good in my life, the things I truly care about, always have a “but …” tacked on the end. I know in some ways it keeps me grounded but it’s too much — it taints everything, gives it all a metallic aftertaste.  Thanks rare cancer! So yeah … every day I get is one more day closer to my goals (experiencing her life with her) and one day older and more capable, at least in my mind, she is of dealing with the aftermath should I pass away from this fucking disaster.

I really need to start writing down more of what I think about in the wee hours of the night when I’m happily medicated. I hate waking up and knowing I came up with some new Earth-shattering thought but forgot what it was.

Lastly, and so as not to end on a total bummer, I’ve decided that regardless of my blood counts I want to go diving again. Not tomorrow, but perhaps after the stem cell transplant I’m going to reassess where I’m at and see if my doctor will prescribe antibiotics and anti-fungals prophylactically so I can safely do so.  I’m in dire need of not only a vacation but the feeling of diving again — I can’t take it anymore. I want to float, weightless, without beeps and rings and doctor visits and text messages and chemotherapy and the rest of this turned-south always connected never-good-news life I’m trodding through.

Going into the usual Social Media blackout for the weekend, so have fun and see you on the flip side.  Next doctor’s appointment is next Wednesday so I’d imagine I’ll be writing something around then-ish.