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I’ve been withdrawn, well, really in a lot of ways since I got the bad news about my CAR T results from Nashville.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.

Mid-Afternoon Rambling.

Have you ever seen one of those crazy videos where someone’s mountain biking on the top of a mountain with a sheer drop off either side? I feel like that emotionally today.

Not sure why, really. As far as I know I slept OK, although I woke up soaked in sweat. Felt like hell when my daughter woke me up but that’s the norm now. I get up, make some coffee and when it’s cooled enough take my morning medications with it. 30-60 minutes from then I start feeling “normal,” or at least like I can function at some minimal level. Hit Starbucks on the way to work for more go-juice and have just been sitting here, not really accomplishing much, ever since.

My wife had to help me get my socks on today. That’s embarrassing, but kind of her to offer.  I can do it but the yoga involved isn’t fun.  No idea what to do about that (my back) … my flexibility is next to nil and I still have daily back pain. I’m afraid if I go for more testing though they’ll find another tumor or fracture and I just don’t want to deal with that right now. That probably seems reckless but it is what it is. The back surgery I can handle but screw getting radiation treatments again.

I’ve at least gotten a few things done today to clean up the to-do list, like a renewal of this new sleep drug (Seroquel) that the mental health folks in Aurora had me try. Still question whether taking anti-psychotics is the way to go for a sleep aid though, especially when the website says to stop using it if you are experiencing sweating, chills, weakness. Might try a night or two without this one come to think of it, now that I’ve ordered a new bottle of course =/ I was on Zyprexa for sleep before too and it’s the same sort of drug I believe.

Ugh, sweating like a pig. I wish I knew what was causing my internal thermostat to freak out like this but I’ve about had enough now. If I’m not sweating I’ve got the chills. There has to be a solution to this somewhere. I’m guessing either the steroids I’m still on (and will be, apparently, for a while) or the stuff I’m using to sleep is causing this. Would kill for a day without soaking through my t-shirt or freezing to death in a 70 degree house though (for most of my life I thought that was actually too warm).

Got my appointments with CBCI set up with the new nurse navigator and got the status of the liver MRI appointment (waiting to be scheduled since it passed approval in finance).  I needed to call Nashville about my clinical trial status today, damnit. That’s one thing I have to do tomorrow now, all the contact info is at home.

Wish I could bust these blues today.  The last few weeks I’ve felt disconnected, even once the mental wall was rebuilt as the Ambien cleared my system. I know realistically that on a lot of levels that there’s no point to being depressed right now, but I’m having trouble shaking it. I guess it’s just been so long since I’ve felt remotely close to “normal” that it’s weighing too much on me — sick of it. I’d like a day with some energy, no pain, laughs, and not feeling like an outsider in my own life.

I think part of it lately is it seems like a huge portion of my life is spent dealing with this — like all of it, lately. Forgetting for a second the never-ending appointments and trips downtown to the oncology clinic, just the day-to-day constant reminders of the disease — the pain, the pharmacy’s worth of pills I have to take every day, feeling like shit, the depression, the constant anxiety about every little weird physical thing, yada yada yada.

I cannot express how much I envy people without cancer their blissful ignorance of this existence or the lack of these things that they are allowed to take for granted.

Anyways, hopefully the social worker I talked to Friday will come through soon with a list of therapists I can get in touch with, because this has got to change.

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.

The Summer of 2017.

When I was a child I had a little stuffed bear.  I couldn’t tell you what he originally looked like even though I still have him — almost 47 years of wear and tear from myself and of course now my daughter, on top of being mauled by various dogs through the years, have taken their toll.  In fact he’s more triage than bear at this point.  A sad faded yellow with a white belly, a hard surface where presumably at some point the nose was attached, and covered with my father’s best attempts at sewing him back together after one of the labs would get a hold of him.  Stuffing leaks from unfixed holes in his belly sometimes and both ears could use some reconstruction work.

I’ve thought a lot about that bear recently. This just hasn’t been my year, especially physically — three surgeries have left me looking like him in my mind (with a slightly worse tan); scars across my stomach, translucent skin, no eyebrows or hair, etc.  As I write this, in fact, today marks just over a week since I was last in the ICU at the hospital and the longest I’ve been out of PSL in the last three months.

I realized something (well a lot of somethings, but one big one) during all of that time.

I have cancer.

I hope that makes sense in a non-patronizing way — obviously I know I’ve had cancer for over 4 1/2 years now. But up until this year it felt manageable, almost surreal … something you can picture, form words around, but not really understand.  As Dr. Mikhael at the Mayo Clinic pointed out to me years ago I wouldn’t even know I had a terminal disease except people kept telling me I did (and making me take drugs for it).

But this year?  This year I’ve watched, helplessly, as my health has deteriorated to the point where on a few of these visits I (and others) were convinced I wasn’t going to be leaving the hospital again.  Worst of all, at least to me, was having so much time to really think about that.  At the risk of making too broad an assumption I think most people would prefer to die suddenly, painlessly, their affairs in order.  But there’s a special Hell in just waiting and kinda wishing to die that defies me to really explain it satisfactorily, in crying yourself to sleep in an uncomfortable hospital bed thinking it wouldn’t be so bad if you just didn’t wake up tomorrow.  Even though the consequences on those around you that you care the most about would be so brutal — that tipping point, emotionally, where you just stop caring and the pain of it all trumps the logical, the kind, the caring.  Where you just don’t want to feel anymore, anything.

It’s that inflection point that really scares me about death when I think about it — when I can say to myself that I’m sorry, Ariana, but daddy just couldn’t take it any more.

I haven’t updated for a while, I should probably tell this tale.

VTD-PACE round four fucked me up pretty good.  It did its work, in terms of my numbers (which typically I don’t have handy as I type this), but the price was too high — I’ve been a medical dumpster fire since the end of the treatment and the khyphoplasty for my back fracture.

Things started like the post-PACE hospitalization week always did each cycle, with this overwhelming mental, physical and emotional sense that something was seriously wrong. Each cycle that’s gotten worse but round 4’s was impressive — I was a basket case for a few days. I can’t even put to words, were I even willing to share the thoughts and imagery, of what was going through my head. I would hazard a guess that the massive amounts of steroids in this treatment causes this reaction, but regardless it’s the death of all hope, this black pit that you can’t get yourself out of except by waiting it out.

Then the cold hit.  Having just been hospitalized for pneumonia I wasn’t too worried as I felt decent-ish and had just had an IViG infusion, but then the sputum I was coughing up started being mostly blood (sorry for the gross image) and other symptoms started appearing (body pains, shortness of and difficulty catching my breath, etc.).  Back to the ER and into the hospital again.  Turns out not only did I still have (or had developed a new) pneumonia, but I had mold in my lungs.  Aspergillis, if you were curious, although I prefer to call it “Bob.”  Aspergillis sounds like somewhere you have dinner in the Hamptons after beating the slaves or whatever people who live in the Hamptons do for fun.

And that, btw, is the end of the MMJ treatments for now.  Which figures — I take something like 17 medications and the only one that truly helped is now lost to me.  Yeah that warning about how immune-compromised people should probably avoid certain things?  Not bullshit apparently.

The mold thing led to a deeper problem — one of the main concerns with PACE is the damage it can do to your kidneys and other organs.  Same as Myeloma, really.  For the kidneys your doctors in the hospital look at the “creatin” number every day from the midnight blood tests (that’s when they do them at PSL anyways) as a proxy for that damage being done. On top of being already irritated, some of the tests (CT scan with IV contrast) can damage the kidneys as well, and sure enough in trying to nail down what the mold was and what it was doing my creatin shot through the roof.  All of a sudden I’m meeting kidney specialists who are assuring me we “probably” wouldn’t have to do dialysis and any damage “probably” wouldn’t be permanent while debating if it’s even safe for me to have a Tylenol.

How do you fix things before it gets permanent?  Tons of fluids.  Unfortunately when you have liquid in your lungs already from pneumonia the last thing you want to do is flood your lungs.  That diuretic treatment I’ve talked about before that makes you pee a lot, Lasix? Bad for the kidneys too.

Were that all I’m sure things would have gone smoother, but then out of nowhere I start experiencing excruciating pain in my chest that popped up one random day in the hospital and got so bad I needed painkillers to breathe.

One thing to note here, btw — if you are ever in the hospital and even remotely suggest to a nurse that you have chest pain, prepare for a lot of tests, a lot of monitoring and to meet all kinds of new and seemingly unamused doctors.  Immediately.  In my case it was diagnosed as periocarditis, an irritation of the sac surrounding the heart.  The CBCI doc rounding when this was discovered thought it was probably brought on by the chemotherapy, but either way they began treating it (I forget with what — was in there for two weeks and lost track of time) and within a day or so I was feeling better.

To deal with the mold, the infectious disease doctors (more specialists) wanted a certain level of anti-fungal medication in my system.  For some reason these drugs in pill form are super expensive so before I was discharged we had to make sure not only that my creatin (read: kidney irritation) levels were plateaued or dropping, but that I had the anti-fungals doing the work AND the pharmacies had more anti-fungals for me AND the other drugs I was taking wouldn’t interfere.  Apparently you’re on these for quite a while too.  So I get prescriptions called in and get discharged after two weeks at PSL.

Keep in mind the whole time I’m missing my daughter and freaked out about what she’s thinking — that’s a long time to be away from a 5-year-old, much less in a hospital she can’t even visit (14-year-old age restriction).  We FaceTimed every night, of course, but even sitting up and taking my oxygen out for a bit must still have been scary.  I’m still missing all of my hair, including my eyebrows, so me sitting up in a hospital bed in a hospital gown isn’t exactly the most comforting image.

On the bright side at least I knew, relatively, that I was safe.  So days pass, I felt a lot better, say 80-90%, and a’ discharging we go.

The next day we go to pick up my anti-fungals and … the insurance company refused to cover them.  For several thousand dollars of medicine too, otherwise I would have just eaten the cost.  Not thrilled since this was supposed to have been taken care of before I was even discharged, I let the doctors know and we planned to deal with it at a follow-up appointment a few days later.

I’m trying to get the timeline in my head right at this point but basically I got discharged on Friday the 29th of September here with a Monday follow-up appointment at CBCI. That weekend I felt fine until Sunday, when I started feeling exhausted and ended up going to bed when we put our daughter to bed around 7 pm.  Had the worst nightmares of my life that night as my health deteriorated throughout the night. Thankfully my father was able to give me a ride to CBCI but my wife had me take my in-hospital bag and laptop, because sure enough they re-admitted me that day.  Some of the CBCI personnel I know noted at later visits how bad I looked that day.

I actually thought that was kind of it again, really. I think we in general have this perception, perhaps due to the gravity of it all, that you know when the end’s come. In reality what I’ve learned and come to expect is just a slide into oblivion — the system overloads, the failures mount up and at some point it’s just too much.  Needless to say I was not in a good head-space at this point.

Spent another week in the hospital, more tests, and go home — pneumonia again plus more of the periocarditis-related issues.  A night later and I can’t breathe deeply without severe, stabbing pain and even with home oxygen canisters I had to take a few minutes after climbing stairs to catch my breath.  Freaked out but having oxygen and an appointment at CBCI that coming week I tried to grit through it but I was terrified — not being able to breathe is pretty awful, as are the thoughts that go through your head.  Is this my life now?  What do I do if one of these O2 cans fails, just die?

I emailed the oncology team the night before my appointment and told them what was going on and was admitted to the ICU the next day.  Queue tons more tests including a bunch of echoes which showed that on top of some liquid in my lungs I now had a large amount of liquid in the pericardium sac around my heart, a condition called pericardial infusion. Since there’s a limited amount of space there the heart can’t function normally which was apparently causing the pain and the inability to breathe properly, as well as my randomly going into atrial fibrillation (I think that’s how you say it).  So from 50-70 beats per minute my heart rate would suddenly jump up into the 150’s.

Oddly I didn’t notice when this would happen except that all fucking hell would break loose on the monitors attached to me and a nurse would come running.  It would self correct in about 5-10 minutes, usually before they could even get an EKG set up.

After consulting with CBCI and the specialists at PSL I ended up having surgery to fix the problem, which had ballooned into a full pericardial effusion, where the heart has so much fluid pressuring it that it can’t work correctly, and just short of a tamponade, when it stops being able to work).  The surgery was performed by this awesome guy named Dr. Parker with a ton of experience doing them and they took roughly a quart of fluid from the pericardium.  I now have a new 5″ scar between my belly button and my chest plus a hole where a grenade-shaped drain attached to the surgical site was attached for several days.  I’m on a few different antibiotics, antifungals and antivirals based on what they found when they analyzed the crap they drained out of me, but I’m alive.

Physically.

Mentally and emotionally I’m really struggling.  I relatively waltzed into 2017 by comparison, or as waltzy as you can get always knowing in the back of your head that you have a terminal disease. But after having 6″ of my colon removed, pneumonia twice, four rounds of salvage chemotherapy, mold in my lungs and now a quart of fluid drained from around my heart I just feel pistol-whipped.  I’ve lost a good 60+ pounds and look almost gaunt, a first for me, and not a good look combined with the lack of hair and eyebrows.  I get the chills out of nowhere, presumably from the weight loss, and energy drops I can’t explain.  I definitely do not feel right.

I guess I just feel like I’m cancer now, like this is some big waiting game.  Just when I’ve thought I had a grasp on my reality I’m shown this new level of horror and forced to face it and it keeps happening.  I’m tired.  God two days after I got out of the hospital the last time I had this awful Sunday where I could not stop either sweating or getting the chills and my skin was tingling and I was thanking whatever deity I could think of that I did not have a pistol in the house.  You just hit a limit.  But for some reason I just keep taking it, taking the pain, the heartbreak, the apologies to my daughter for not being able to be a more active or fun daddy sometimes.

Her hugs are about the only thing that helps, even though they break my heart.

I’m quieter now.  I’ve already experienced people not recognizing me physically thanks to this year but it feels different when I talk to people.  Awkward, a little.  I mean it’s always a lil’ awkward when you have cancer to talk to friends, we all know that, but this is different.  Like I’m an observer, almost, a third-party participant that doesn’t quite fit in.  Hard to explain.

On the bright side, if you can believe there is one, we got a puppy.  I really didn’t want a dog and my wife and daughter are allergic, but they found some hypo-allergenic cute five-month-old silky / Havanese mix. Not even sure I was leaving the hospital ever again I said yes, even though I prefer cats, but it’s worked out.  Beatrix is a bundle of love and a joy to just pet, and I think it’s what our family needed right now.  Besides pets pick owners, not the other way around.

And it’s not like I wasn’t already washing my hands like I had OCD with a kindergartner in the house anyways, right?

Lastly RIP to @CultPerfectMoms, someone I’ve followed on Twitter for quite a while now.  Her last blog post can be found here but she only lasted a few more weeks.  In a small way her struggle, and final acceptance, helped me when I was in the hospital to keep just taking a step forward even not knowing (or wanting to know) what was coming tomorrow to see my daughter again.  Thoughts and prayers to her family.

 

PACE round 2 wrap-up and other precious moments.

Drip.  Drip.  Drip.

People who watch grass grow or paint dry have no idea how much more engaging it is to watch IV fluids.  Sitting at CBCI getting the monthly IViG and trying to find a path home with this blog entry, but there’s a part of me that wants to play the cancerous version of “how many licks does it take to get to the center of a Tootsie Roll Pop” (ancient commercial reference) with my IV.  Although with chemobrain I’d probably blow the count halfway through and then be pissed for a month.

“5,400,001. 5,400–“

Nurse: “Can I get you anything?”

“5,400,0–, err, 5,4 … GOD DAMNIT.”

First the good news. As hard as it’s been on me physically, the two rounds of this “kill it with fire” chemo are getting the job done.  From a peak in early May my M-Spike has gone from 3.9 to 2.8 (and according to an email I just got, 2.3 as of Monday), igG is down to 3,786 from 6,041 and my Kappa is down to 436.8 from 1,178.6. Not bad, although I had greedily hoped for even more drastic results for several reasons; perhaps most of all because if you are going to go through the hassles, the GI issues, the pain, the fatigue, being in the hospital for a week, the mustard stains on your favorite t-shirt from ordering gourmet hotdogs delivered to the hospital (what, that could happen to other people), etc., you want to get your money’s worth. The results were good enough, however, for my doctor to want one more cycle as per our meeting this past Friday.

Sigh.  I go back in on the 19th. If you work at Billy’s Gourmet Hot Dogs then congratulations, I’ll be paying for your next vacation.

At the meeting last Friday I also met Dr. Matous’s transplant coordinator, Dana, who gave me THE BINDER. Having gotten one from the Mayo Clinic when I did my first stem cell transplant and now one from CBCI I’m assuming this is standard practice, but for the uninitiated THE BINDER is a collection of information on what to expect, rules, diet, scheduling, yada yada yada.  I read through it this weekend and was amused to see that there was a special callout about marijuana in the rules — specifically, ixnay on the opeday during the hospitalization and afterwards, including edibles (that part makes no sense to me, but OK). Although they did separate out marijuana from the “recreational drugs” category, so that’s progress. I’ve been an activist for medical marijuana for several years now so seeing stuff like that makes me believe that attitudes are indeed changing at the higher levels, especially in healthcare.

You also can’t have nail clippers or a razor. You can however have people bring you restaurant food which seems odd since at the Mayo they were pretty adamant about not eating food that hadn’t just been cooked and served to you, but hey, if I can get delivery while in the hospital for three weeks then it will make things a lot more pleasant.  I’ve noticed that, much like staying in Vegas, no matter how good the food is (and PSL’s is pretty good) you still feel like you’re living in a Denny’s after a week or so.

Speaking of razors, when I entered the hospital for round two of this chemo I started losing my hair in earnest thanks to the first cycle. Irritatingly I only started losing it in the middle of my head, making me look like a poster child for those spraypaint your head infomercials for baldness, so with nothing better to do I busted out my shaving razor and shaved my head during my inpatient stay. As an encore all of the dark hairs fell out of the goatee section of my beard and mustache, so I shaved that all off too. Unfortunately I think in doing so it opened somewhat of a Pandora’s Box without me even knowing it that has fueled some of the depression I’ve been feeling lately. I think it’s a pretty common tale in the cancer world, but since only one previous treatment threatened hair loss (my first stem cell transplant in 2014) and it didn’t really happen I never gave it much thought.

Now I find myself staring into mirrors or purposely ignoring them; I feel like I look like Uncle Fester from the Adams Family. It reminds me a bit of year one when I was first coming to grips with this fucking nightmare while doing chemo during the day (Velcade shots) and feeling an intense isolation as I walked out of my office building when everyone else was going to lunch. Perhaps it’s silly but I find myself battling self-conscious thoughts, something I thought I had been done with by forty-six. I have to consciously look past the feelings of embarrassment now even though I know it’s ridiculous. Might as well get used to it, though, as with another round of this followed by a stem cell transplant I won’t have a beard again until around Christmas-time.  Grrr.

I imagine that seems a petty concern when you are facing a terminal disease. Honestly I never thought it would be a big deal to me, especially since I’ve had my head shav– err, shaved?  Shorn? Whatever, I’ve been getting the brain basket done with a #1 razor for a year or more and had a full beard since my goatee started growing back after the first stem cell transplant. It’s different than I thought it would be though, adding a visceral in-your-face reminder of this disease that I can’t avoid around reflective surfaces.  Didn’t see that coming.

I did, however, talk to my oncology team’s nurse practitioner about depression today. I’m reasonably sure, when I examine things from a distance, that I am in fact depressed. Duh, obviously, but I mean on a level where I would like to go after relief medically so I can function. After consulting with a few psychologists on staff, the oncologists want me to taper off of Lexapro, which I started when I was first diagnosed (suicidal thoughts, general depression) and start taking Effexor. Hoping this works since I was at the max dose of Lexapro and lately I’ve been feeling like it may not be working very well. Fingers crossed because I really do not need a healthy side dish of depression along with my heaping pile o’ cancer.  Especially heading into a gauntlet of some fairly hardcore regimens this year.

One way or another, one way or another,
One way or another, this darkness got to give.

Been listening to the Dead a lot recently (that snippet is from New Speedway Boogie, an old favorite of mine), partially because I’ve been watching this great documentary mini-series on Amazon about them and really it’s just been a while since they lead the mental rotation of what I feel like listening to.  I get in a Dead mood about three times a year and then binge on the live stuff for a week, which you can now download a fuckton of from iTunes. Which still seems weird and out of place to me, just like it does when I download old punk music, but we do live in a convenience-centric world now.

But I digress as usual.  Today at CBCI I also asked if I could get a “why” as to why we’re doing a stem cell transplant, especially when the first one didn’t really do much and subsequent ones are, as I was told when I was at Mayo, only 75% as effective as the first one. Not that I don’t trust my oncology team, but I’ve now been asked this twice by folks and neither time have I really had a satisfactory answer. If I’m going to deal with the incredible hassle, danger and three long weeks without seeing my little one I need to know for myself why I’m doing it beyond just a vague “to reduce my numbers.” Should have an answer next week as they are going to discuss this question at their Thursday meeting.

Thinking about transplants reminds me of a good stem cell transplant story, however.  Back in 2014 when I did my first one I moved my family to Scottsdale for several months and set up my laptop to Skype with my daughter every night (who was three at the time).  So the first night I get on Skype all excited to see Ariana who, after maybe one minute of talking to me, turns off camera to her mother and asks “How do I change the channel?”

Edit: Almost forgot. Found out an old friend was struck down with a brain aneurysm this past weekend and is fighting for his life. I’m not the praying type but if you can spare a few seconds to send some positive vibes for Rob S. and his family I’d sure appreciate it — his kids don’t deserve to grow up fatherless and I have no doubt he has a ton left to offer the world. Thanks.

“Good Morn– ” *SLAM*

Some days you just KNOW what’s coming.

So all of those chemotherapies they gave me as a cocktail from Hell last week? Pretty sure the side effects are kicking in today.  They certainly are kicking the crap out of my blood counts:

  • White blood cell count: 0.9 (4.50-11.00 10^9/L)
  • Red blood cell count: 2.34 (4.4-6.0 10^12/L)
  • Hemoglobin: 7.2 (14.2-18.0 g/dL)
  • Hematocrit: 21.3 (40.0-54%)
  • Platelets: 27 (150-400 10^9/L)

For those who aren’t hematologists, nurses or just one of us dying from a blood cancer, it’s the hemoglobin that, at least for me, has been so low as to necessitate a blood transfusion.  Seven is the threshold but there’s wiggle room, such as when you were at nine-something two days ago.  I knew something was up this morning when I woke up exhausted after a decent nights sleep. That’s always such a bummer … bad enough to have to wake up in the first place when you don’t want to get out of bed, but on top of it immediately experiencing the low blood count version of this:

giphy

That kills me every time.

So to back up a bit, I had an appointment today for labs and more Velcade.  My assigned nurse in the infusion center said that I didn’t actually need labs since there were some done two days ago.  I didn’t think that was correct, given expected blood count drops from the VTD-PACE, but I specifically wanted to see my hemoglobin in case I was right in thinking my exhaustion was being caused by low counts so I requested the test anyways.  Sure enough I needed blood, and there’s a lesson in there about being proactive with this stuff.  After four years I’ve become fairly well attuned to what my personal meat popsickle is going through.

Always be your own advocate!

Unfortunately it’s kind of a Pyrrhic victory. As in “great, you were right!  Now you’ll be here the rest of the day.”

Oh well.

While in the infusion room at CBCI I noticed a FELLOW patient of my doctor that I had spoken to briefly once before.  I jotted down the blog address and gave it to him, a returned favor for a business card he had given me the previous encounter.

So for obvious reasons — well, at least obvious if you read the previous blog post — I’ve been thinking about the loneliness of cancer a bit lately.  It just seems like Myeloma itself is forcing an isolation on me … which probably is about as clear as mud.   Hmm … OK, see if this makes more sense: so there’s a 1 in about 143 chance, or 0.7%, that you’ll, err, catch?  Do you catch cancer? Well whatever. So it’s 0.7% you’ll come down with a terminal case of ze Myelomas.

But then what if you’re not even in the target demographic? I know this disease is striking at younger and younger folks but when I’ve been to three different top level Myeloma centers I’m the youngest in the waiting room by a good 20 years.  Minimum. I still would have yet to actually meet (and become great friends with) another person with Myeloma had it not been for a mutual friend.

Of that population, according to a slide I saw from ASCO earlier, only about 33% are online with some form of social media. So yeah, there’s only a handful of us that are easy to find.

Being singled out in society, even if quietly with a rare disease, is a weird feeling.  A VERY weird feeling.  Like last person on the planet feeling.  Not knowing anyone who can really 100% sympathize, no fucking clue how you got this … I mean humans are no different than the moles you hit in a whack-a-mole game — safety is with the group underneath. It’s written into our genetic code.  Danger is outside the herd, through the holes.

Nobody should have to fight alone.  Especially this fucker of a battle.  It’s just a bit too much to ask of someone — a lot too much, sometimes.

Anyways, hope if you get here, my friend, you know the door’s always open — email, Twitter, whatever.  Nobody has to go through this shit alone.  And I still have every intention of taking one of your classes!

Sat down with the wife last night. She says she’s still committed to our efforts and that, as I relayed Tuesday night’s fun and my thoughts this past week, we have “different recollections” of that night.  Time will tell.  This is another reason, however, why I truly feel some sort of social worker HAS to be involved with cancer patients. The side effects of these drugs can be overwhelming if you don’t know it’s coming.

What else … oh, the big ASCO meeting is going on in Chiraq this weekend. Oddly enough I didn’t know that (took about a week off social media this past week) until I talked to a cousin who is on his way there as part of the industry.  Someday I would like to go to something like that — although I have a feeling the Adult Entertainment Expo or the local Cannabis Cup has vastly cooler giveaways, at least if you are travel planning based on cancer-related life expectancy.  Plus you can get herpes easily at the AEE (there’s probably a booth that gives it away), although I’m not going to rule that out at the other two.

Either way I’ll re-Tweet (God, I swore I’d never say that phrase out-loud, sigh) anything interesting that us plebes can understand on Myeloma.

Hmmm.  You know that’d be a neat business to own, come to think of it … a travel agency for the Doomed.  Could call it “Fuck It Travel.” High-dollar vacations for people who decided their kids were too shitty to leave anything to and want to blow the savings on one last hurrah.  I like it.

And on that note, I’m done. And as usual, I apologize for what I’m doing to this unit of new blood tonight.

VTD-PACE, days 2-3.

Just a quick update. Other than some nausea and some 4 am hi-jinks with a separate IV things are going smoothly.  Not enjoying the Dex at ALL even though I am in a cheery mood, really.  Hoping the drug who’s name I’ve forgotten since Monday is helping with that.

The biggest issue, really, has been boredom. When I’m on high-dose painkillers, my usual regimen for being in the hospital (due to the flu or pneumonia), the little aches and pains don’t bother me.  I’ve found this time I can’t get super comfortable, so I’ve been sitting in a chair in my room on the laptop when I can. Sadly I have a brand new lap desk sitting at home but everyone I know outside of the hospital that would bring it down here is sick =/

Second would be the Dex … normally I would get 40 mg a week from what I’ve experienced with with it before.  With this chemo I’m getting 40 a DAY.  Let’s just say my restless legs have started their own band.  I’ve also put on over 15 pounds in 3 days!!! All water weight and being retained by the various chemicals, but now I’m on Lasix which helps you pee.

A LOT.

That’s a pill btw, not the eye surgery.  My nuts see just fine.

One risk I think I talked about before with this, and I keep forgetting the damned name of, is that the PACE works quickly and explodes the bad cells (and some good ones too I’m sure). So the nurses and doctors monitor various things like calcium and magnesium (think that’s right, I’m a lil’ fuzzy).  Anyways, my calcium is up so hopefully that means this is doing some work — that’s part of my good mood.  If you have to go through this it might as well work, right?

I know the really bad side effects are days 7-10 once I’m home, but keeping my spirits up.

THIS.  WILL.  FUCKING. WORK.

That’s my prediction.

The nurses here at PSL are great on the cancer ward (and presumably elsewhere here) and have made this a lot easier.  Quick responses, intelligent ideas, etc.  Today’s nurse, the awesome Tara, is usually a charge nurse AND she lives with a coordinator for my care so I know I’m in good hands.  Add to that Kellie and Rita (mostly adding these here so I don’t forget the names for a thank you, btw) and it’s been a pretty smooth ride.

Been doing a ton of walking every day as well.  Not sure what that accomplishes but it breaks up the boredom and seems to be appreciate by the nursing and doctor staff.

Man this is a Facebook update, not a richvsmm post.  Guess that’s alright sometimes.  If it helps you rest easy that I haven’t turned into a Hallmark card, though; I did send Congressman Ken Buck from Colorado a “Rich” Tweet yesterday:

If it helps, though, my 5 1/2 year old Facetimed me yesterday without her mom’s help … after she got bored she just started staring at the TV over the top of the iPhone though so we cut it short, heh.