“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:

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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.

And here … we … go.

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VTD-PACE, first day of treatment.

Got to the hospital around 8:15ish in the morning. Pretty sedate day, really.  Port accessed, blood tests taken and then a lot of downtime before the pre-meds and the cocktail of Doom was ready.  I spent most of it sleeping … I’m on a new sleep aide that I started Saturday that is also supposed to help with the Dex side effects and I think it’s working a bit too well.  Thankfully I was able to just relax and get some rest today. My blood counts, for once in the last few months, were not bad enough to merit a transfusion too so yay!

For those who missed it and don’t know, VTD-PACE is a salvage chemotherapy.  Our plan is 1 of these treatments per month for 2-3 months followed by a stem cell transplant (auto, meaning my own stem cells).  This year my Myeloma started to get ornery and the numbers are a bit out of control, so “salvage.”

I’m currently getting Velcade (shot in stomach), Dex, Cisplatin, Cyclophosphamide, Adriamycin and Etoposide. I was told most of the side effects are the typical ones (nausea, fatigue, hair loss) but that each drug had it’s own idiosyncrasies in terms of dangerous ones. One can damage the heart, one can inflame the bladder, etc..  On top of that there’s a risk that the chemotherapy destroys the cells (there’s a name for this) in your blood stream that can end up causing kidney damage.  Those side effects are why I’ll be getting monitored every 6 hours until I’m released on Friday. The lenalidomide (sp?) will begin hopefully later this week as soon as it arrives (hospitals apparently don’t stock the stuff and mine hasn’t been sent yet but the oncologists are on top of it).

Because of my past with it I’m mostly concerned about the Dex. 40mg a day for 4 days or something equally as absurd. Hoping the new sleep aide who’s name I keep blanking on (I cheated and looked it up, “Zyprexa”) will help — it’s an anti-psychotic that also helps with sleep. Since I’m pretty sure they frown on blazing up a joint in the hospital room you go with whatcha’ got I guess.

I do feel hopeful by the way.  Never assume just because I tend to come across as bitter here that it equates to “hopeless.” I am bitter a bit, but it’s rare that I’m not thinking of something funny. That goes back to some MASH episode I watched decades ago, btw.  There was one I’ve never found again where Hawkeye (Alan Alda) is explaining to someone that the reason he and his friends do all of the crazy stuff is that if they didn’t, in the middle of a triage camp in Korea, they’d go insane from the horror. I 100% get that. Looking at photos of people wearing silly costumes and stuff to chemo it’s obvious to me that most of us get it.

I mean it sucks, right?  So have fucking fun with it. Met some really amazing people on staff at CBCI and the hospitals over the years just by making them laugh. After I finish this entry I have to make a list of documentaries I’ve loved for nurse Rita, another awesome nurse at PSL that I’ve worked with before.

Not only am I hopeful but I’m in a “fill it to the top and let’s kick this fucking thing’s ass” mood right now.  Enough’s enough, and if I have to live through the next two weeks with all the fun side effects, etc., I not only better get some good results or I’m, well, I dunno.  We’ll try something else and rock that. Whatever, you know?  I think being pragmatic and active in seeking treatment’s the best you can do in this situation, and I’m doing it.

With lots of cool stuff I snuck in from Trader Joe’s and hid in the closet.

Shhhh.

Nothing too deep to get into today — I’m in a good, positive mood and I’d rather not risk giving that up quite yet by getting into things. I’ve had to do some hardcore “don’t think about this” work in the last few days which, except for my daughter crying and telling me she didn’t want me to go” repeatedly (which broke me down last night) I’ve been mostly able to do. I’d like to write about my visit to the scuba shop I used to work at this week but we’ll see.  Trying to avoid the known triggers right now for obvious reasons.

One thing I would like to mention, and I’ll be putting up some sort of Surgeon General’s warning page about this when I find the motivation (and some other blog fixes I have in mind). I write to exorcise things. I do it in a style that makes it read smoothly (well, most of the time) because I did things like this for a living and learned how — I think in column format now when I write. It works brilliantly most of the time but with a caveat — those who read it tend to only see the negative things I’m writing about and assume that’s me.

It’s only half at most, though, the Mr. Hyde half.

That being said, I firmly believe EVERY cancer patient has the thoughts I write about and similar reactions even if they keep them quiet. I made this blog public because I prefer straight talk and it was frustrating to me when I was first diagnosed to not be able to find that level of brutal honesty in most of the blogs I ran across. Which is fine, right? Look not only do I think it’s great if your faith or your indomitable positive spirit is what gets you through, but I envy you in a lot of ways if you’re that person. It’s just not how I operate, and as a result this blog is going to read as bitter, angry, crass … you name it. So if you need more positive emotions I won’t be offended, promise.  Hell hook me up and I’ll check them out!

But pssssstttt … if you too get frustrated with your personalized death sentence, rest assured that others have felt it, and I’ll be your voice if you don’t want to admit that to people. I understand that too. K? I bet there’s at least one person reading this who not only would never in a million years drop an f-bomb and cringes when I do. But staring at those ceiling titles one day trying to justify all of this in your mind, you dropped one. Even if it never crossed your lips. And that’s OK. Don’t say it out loud; I’ll say it for you and it’ll be our little secret. You deserve that F-bomb, my friend. Fuck cancer, and fuck chemotherapy, and fuck what it’s done to our lives, the experiences we’ve had to have, the fear of test results, the never-ending hypochondriac level of concern when something new happens, yada yada yada.

You aren’t alone. And as I’ve discovered four years into this, neither am I.  I’m amazed in just the last month how many really neat contacts I’ve made in various cancer communities and what I’ve learned. I’m happy to help you get started with that as well, if you ever need it — just message me.

As long as you promise to understand what this blog really is and that it’s not all of me, that is.  Hope that makes sense.

Will post updates when I can. Here’s a pic as promised … one interesting thing I hadn’t seen before is the amazing nurse Kellie put brown bags over two of the chemo drips. She told me that was because some of these chemos are light sensitive.  Trippy. She also recited from memory what each does and the side effects which impressed the hell out of me. You can see the bags over the IV bags here:

IMG_5920

And look, that’s almost a smile!  Well sorta, the really smiley pics were just fucking goofy and as you can see I have bed head, hah.

Also that GIANT bag on the right is a 24-hour infusion. That makes your urine red, apparently.  Things that it’s amazing to know about BEFORE it happens. So thanks again awesome nurse Kellie!

Also I am not photogenic. In 46 years I have come to accept this. Goofy ears, still a bit overweight (but getting better!) and the signature scowl do not a paparazzi’s wet dream make.

Have a fun week and I’ll be in touch.

 

VTD-PACE, another SCT … must be Christmas.

I, um, yeah.

Fuck.

Got a call that registered as my oncologist yesterday, so I was emotionally unprepared when instead of a scheduler confirming something it was my entire oncology team. I apparently came up at the office’s weekly meeting.

Have some bullet points.

  • This Friday we’re stopping the Daratumumab. It’s not working on any of the numbers at this point except possibly slowing the advance of the Myeloma slightly. I’d share the numbers but for some fucking reason all of my labs show up on HealthOne’s patient portal except my Myeloma labs. USEFUL.
  • After review the team wants to proceed with VTD-PACE. I went into detail on what I know about that treatment in this entry, but I meet with one of the team on Friday to learn more and schedule it. Ninety-six hour infusion of Dexamethasone + Thalidomide + Cisplatin + Doxorubicin + Cyclophosphamide + Etoposide + Bortezomib. The first one will be in-patient, the next ones outpatient depending on the outcome and complications of the first treatment.
  • I was told that with few patient exceptions PACE works as the “fire putter-outer,” which I need now.
  • After a 50% or more reduction in my M-Spike and IgG, which they expect to happen within 2-3 treatments, they want me to do a stem cell transplant (my 2nd) six weeks later (time to recover).  This would be August-ish.
  • Once that’s done, most likely a CAR-T clinical trial. They are starting one up in September at my oncology office, but if that’s full they will refer me out.

This has broken me for the last 24 hours. Normally, or whatever the Hell that even means anymore after four years of chemotherapies and an SCT in another state, I can mentally compartmentalize bad news and just examine it in small, controllable chunks. Things like this, however, make my emotional wall about as effective as one made of sand in the face of a hurricane. I flip from this surreal sort of disbelief that this is happening, and happening so soon, to outright breaking down.

It’s hard to describe what it’s like to not be able to look at your own daughter without losing it. I have zero control right now.  I just … I can’t.  Not today, sorry.

Was sitting here thinking about how to express how I’ve felt since yesterday. With the exception of last night, when I bleached my brain out with a combination of the darkest, grittiest metal I have cranked so loud it hurt and a ridiculous amount of Crazy Train, I can’t even type the words. It’s too painful.

This is about as close as I can approximate:

Shame that show never lived up to its pilot.

As a cancer victim I’ve often marveled, usually in a disappointed sort of way, about the way my perception of life has changed after four years of this disaster. One example is how on that call yesterday I was told to probably expect more transfusions. Ever since the first one I’ve always felt guilty about being transfused, like there was someone more deserving or needy of that blood than me. I feel the same about staying in a busy hospital, like there’s always someone more deserving or needing that room and I need to apologize for taking up space and time.

The dark epiphany is realizing that no, those things exist for people like me. There’s a snap to reality there about how really sick you are that can be pretty brutal, this sudden and painful paradigm shift between looking at the worst-case scenario world you thought you understood and the universe making sure you know full-well that you are in fact in the epicenter of this nightmare.

I don’t know if that’s explainable in a real sense to people who haven’t experienced it. Let me put it this way: you know you have a terminal disease. But there are days when you KNOW you have a terminal disease.

Different levels of comprehension and reality sinking in.

Probably not going to be writing again until next week from the hospital (I promise I’ll include pics). I’ve penned a lot in the last few days, publicly and privately, and I just need Pandora’s Box closed again for now and to get off this pedestal and fade into the shadows to recharge so I can function.

On another note, as a relatively new user on Twitter I discovered two things this week:

  • You can “mute” people that your friends RT so you no longer see the RT’s. Way too much political stuff lately for someone who sits in front of several news feeds all day. I just want to hear and share cancer-related stuff so that was pretty cool — I can keep reading people’s Tweets but cull out with a lil’ work most of the non-cancer stuff I keep having to scroll past. I say this like it’s some new thing but I’m sure everyone but me knew it. I can say, however, that after a good hour of work today I have scrubbed my feed clean and it’s like a whole new experience.
  • When your feed is 99% cancer-related news and you’ve been following 5-10 new people a day from all sorts of flavors of Doom, DO NOT READ YOURSELF AWAKE IN BED WITH IT.  I can handle most stuff but I have ZERO defense against child cancer stories, which were the first things I saw from yesterday. Sobbing yourself awake as you imagine what it must feel like to be told as a parent that the therapies are being stopped and to just enjoy your remaining time together is … I can’t even imagine. I do know I’d rather be the recipient of the soap in a sock code red beating from Full Metal Jacket than ever have that experience in bed again.

I can’t turn this entry positive. I give up.

Cya’s.

Stuck in the middle with you (and $10k of Revlimid)

An email I had to send to my oncology team’s nurse navigator today regarding Revlimid (AKA “Rev”).  Please put this song on before reading:

So non-funny story.

(1) I talked to Accredo or whoever the specialty pharmacy is I get the Rev from a few weeks ago about how when this bottle of 15 mg Rev is done do NOT send me any more as a new order will be prescribed with a different dosage.

(2) Accredo calls my wife, who was not privy to this, and has HER go through all the Celgene surveys, listen to the nurse, etc. and Fedex’s out the 15 mg.

(3) I find out that night and immediately call but it’s too late.  Person on phone and I agree I’ll just not sign for it and it will go back to Accredo, as I’m concerned that BC/BS will not allow them to send me a newer dosage if I have a bottle already at whatever un-Godly price per pill they are charging now and/or this bottle will be a waste.

(4) I get an email the next day that I signed for the delivery (I was not home, nor was wife, neighbors, squirrels, etc.).

(5) I call Accredo and let them know, a rep from whom then (after talking to supervisor) informs me I should just hold onto the bottle, they can’t take something back after it’s left the warehouse, and that the insurance company should be OK with another order being sent if it’s at another dosage level.

These people are all insane to me and I’m pretty sure I got the Fedex driver fired — I’d feel bad but I can’t tell you the # of times I’ve begged them to just drop off my meds and they refuse due to the signature thing, causing me to miss work, have to drive somewhere to get the drugs, re-delivers, sending to office instead, yada yada yada.

Sooo … I have a full bottle of 15mg Rev now.  If Team Awesome (you folks) wants me to go to 10mg a day or what we had previously discussed I’ll need that new ‘script soonish. Or I can continue at 7.5mg every other day, or up it to 15mg again if a comparison of my #’s @ 15mg were appreciably better than now. Obviously it’s all up to ya’ll.  If someone could let me know by my appointment on Friday I’d appreciate it! Think I’m down to 5ish pills, so 10 days at current regimen.

Appreciate you as always,

-[REDACTED]

Clowns to the left of me and jokers to the right indeed.

Incoming rant. Magic 8 Ball, will there be F-bombs?

*shake shake shake*

“You may rely on it.”

Beyond what I said in that email, what irritates me is now it’s MY fucking problem. I spend the majority of my time trying to reduce responsibilities and stay out of the middle of drama so I can spend my limited energy on important and positive things like my daughter, but sure enough, here I am in the middle again. Thanks, jerks. Because what every cancer patient needs is more stress, much less a married one with two sets of parents living in the same state that don’t get along but since mine are the pain in the ass I get to navigate every holiday (like Mother’s Day) like a corpsman on a battlefield and deal with the PTSD afterward. Because you know, let’s have the fucking cancer patient deal with our bullshit, right?

Sorry, apparently I had some hidden aftershocks coming from this past weekend of family juggling. Anyways …

What’s more, I also appreciate (BZZZZTTTTT) the amazing sense of guilt that has descended over me due to this. Here I am linking articles about, commenting about and participating in chats and DM’s about the drug companies and their ridiculous drug prices and now I’m put in the position of potentially wasting what I believe is the most expensive cancer drug on the market when there are real human beings out there dying due to not having it. I have a guilt problem, granted, but this just takes it to a new level. Not like my treatments are doing a goddamn thing for me anyways based on the numbers and how I feel but I always feel guilty about having “Cadillac” insurance. Yeah I worked hard for it, but that doesn’t make it any easier to stomach that others don’t have that privilege or the medicine and quality of care they need. Everyone deserves “Cadillac” treatment … we’re fucking human beings FFS, what could be more important than our fellow travelers in this shitshow?

Now throw this on that pre-existing pile o’ guilt. Can’t wait until I get home tonight so I can sprint to Rich’s Cancer Safe for a Xanax like I usually sprint to pee when getting home after sitting in traffic.

Oh but that isn’t even all of it. I also now have this voice in my head telling me that, while I KNOW my oncology team will choose the option best for me, there’s no possible way the fact that I have a bottle of the wrong dosage isn’t going to enter into what we do about this.

God damnit man.

All I can think of to do at this point, assuming I do change dosages, is to find out from the oncologists if there’s someone I can just give it to that doesn’t have the insurance coverage I do and let them have it. I can’t keep this. It’s a sealed bottle that’s still inside the bio-hazard warning bag inside a never-opened Fedex envelope. If that doesn’t work I don’t know what to do — I’d give it away on Twitter but all I need is for someone to take it and then misuse it or have an adverse reaction and sue me into oblivion.

Look universe: somehow you gave me this disease. I’m still angry about that due to what it’s taken and will take away from me, but who knows? Maybe I die in a car accident tonight on the drive home and the cancer isn’t even a factor. So I forgive you, even though I hate you and wish I had your address so I could Fedex you (SIGNATURE REQUIRED) some trained genital-gnawing wolverines. Daily. But really, knowing that I may survive this and die to something totally unrelated I try to be pragmatic and positive in my own snarky dark humor sorta way. I take all of my drugs, I go to all of my appointments, and I’m as proactive as I know how to be with my own care. And now I’m trying to get out there and help others, even if it’s just giving them a Twitter-bound virtual hug.

I don’t even ask for much: I’ll take your fucking nausea, your “fatigue” (*snarls while pointing at previous entry*), your bone pain, Dex pretty much ruining my marriage, the drug-related weight gain, the friends I’ve lost, the dreams I’ve had to give up, the sacrifices and things I’ve lost so far in my daughter’s life, yada yada yada. I try not to complain, taking it all in one day at a time just like everyone other Doomed cancer-riddled fucker on this rock. And you know what, you cruel bastard?  I can still smile. In fact I can laugh with the best of them and do my damndest to make others laugh too, even about something as brutal as Myeloma.

I’ll be your Huckleberry, you monstrous prick.  Just give me a fair shot at 12 1/2 more years to watch my 5 1/2-year-old grow up.

AND STOP.

FUCKING.

WITH.

ME.

ENOUGH ALREADY.

End o’ rant.

Clinical trial pseudo-PSA thingy.

So I’ve crept out of my shell a bit this week on social media.  More like dragged myself kicking and screaming, really — Twitter is anathema to how I communicate.  I suppose on one hand 140 characters makes for a great editor but it’s too draconian for me … I spend more time trying to cull down characters than communicating.  You don’t get nicknames from editors like “Captain Verbosity” and “the King of Clause” and then do well on Twitter.

All I can say is if Twitter had been one of my editors back in the day when I was a reporter I’m pretty sure by now I’d have peed in their coffee cup.

Repeatedly.

I imagine I’ll get to the point (in life, and perhaps this very entry), if I live long enough, where I’ll just start replying “fuck you” to everything so I don’t have to deal with 140 character limits anymore.  EIGHT CHARACTERS IS ALL I NEED, NOW GET OFF MY LAWN YOU CRAZY KIDS WITH YOUR TWEETS AND TINDER AND INSTAGRAM HOOKERS.

But when in Rome, right? So this week I’ve participated in a few, for lack of a better word, groupthinks on Twitter and the information I’ve heard as a result has been somewhat startling to me.  I didn’t even drop an f-bomb, at least I hope not?  Anyways I’ve spent a long time just reading Twitter stuff from Myeloma “royalty,” but it’s a pleasant trip to actually interact with them.  It reminds me of being an intern reporter back in college and being able, thanks to the newness of the whole ‘net thing, to email the lead investigator on the Unibomber case at the time and get almost an immediate response.  I have a feeling as more patients realize their docs are on Twitter that that access may fade a bit, of course, or become more broadcast only, but for now it still has that Wild West-ish feel to it and the niche elite still interact with us plebes.

Hey if nothing else I’ve learned on Twitter that one of the Mayo Clinic docs who’s always Tweeting is a Megadeth fan.  Now that’s just cool.  It’s also the only tweet I think I’ve ever understood from him, so there’s that.

Anywho, May is dedicated to raising awareness of clinical trials.  At a chat on this last night hosted by @CureForward which you can read here, the last question was (paraphrasing) what are you going to do to raise awareness of CT issues?

Normally I wouldn’t do that (I write when I feel like doing some emotional or mental archaeology, not as a public service) but what I’ve learned this week from participating has had me thinking that this is something I should talk about here.  So let me set up my comments with one of the more startling graphics I’ve seen this week:

c-8gl_aw0aesobm

When the decision was made to switch my chemotherapy to Pomalyst, my oncologist was recruiting for a clinical trial that added an HDAC inhibitor (ACY-241, also known as Acetylon Pharmaceutical’s Citarinostat) to what I was already going to be using.  The argument for this was I was going to be on Pom & Dex (shudder) anyways, so why not add this?  The confidence and feeling that this was a standard move was great, but as a result I apparently missed out on a lot of the difficulties many patients face with CT’s.  For example, there were tests and paperwork to do, but thankfully CBCI has researchers that help with that — in fact the one assigned to me, Sarah, ended up being such a rockstar as a contact point that the process seemed easy from my perspective.  She and the others answered all of my questions and more, as usual being my best advocate (which is one of many reasons I switched to CBCI in the first place).

Given some of the troubles I had during my CT that was critical.  While something in that three-drug cocktail worked inasmuch as my numbers didn’t get *worse*, I missed a lot of weeks of drugs because one or more of the drugs was pounding on my system so hard my immune system went on vacation.  As in “four hospitalizations for pneumonia and now I’m on IViG every month” vacation.  Having someone in communication with the trial hosts and dealing with all of those issues related to my immune system was gigantic.

Not having read up on CT’s in general I didn’t realize at the time that some of the things I was taking for granted in this process are rare for most patients and I was lucky.  Such as:

  • Most patients don’t have the navigation help and advocacy that I was privy too.
  • Many patients have no idea about clinical trials; worse, neither do their doctors.  The information is scattered, outdated (that government site I linked above is not current, as I learned last night) and it seems as if patients are more lucky to find one than anything else.
  • The paperwork can be impossible to understand for normal folks but it’s pretty critical you understand it.
  • Clinical trials can be an effective first line of defense against cancer, not just where you go when everything else fails (a common misconception).
  • Not all trials pay for your medications while in the trial — I assumed that was a standard.

I realized this week as well that a lot of the questions I asked and those around me were concerned about were based on misconceptions and just a cursory, at best, knowledge of how clinical trials actually work. Unfortunately outside of “hope you have the right doctor” there’s no easy fix for this.  Scattered information, uninformed doctors, costs, travel requirements, complex paperwork full of jargon and legalese, concerns about being a placebo recipient, timing, having to find the information themselves and sell the idea to their own doctors, etc.  Well and the whole death thing, since most people only hear about a CT when someone died participating in one and assume that’s a big risk.

A lot of folks are using social media sites like Facebook groups, Twitter and websites to try to solve these issues but that’s part of the problem, sadly.  Just like with regular news, there’s such an overabundance of non-centralized information that your average patient is not even going to know where to start much less be able to navigate even just a handful of the issues mentioned just above.  And for every @Myeloma_Doc who’s advertising daily on Twitter for the trials at their site, God only knows how many people who are running their own trials don’t do so.

So yeah, it’s a shitshow.  At some point some governing body or group like @CureForward is probably going to have to centralize and disseminate information that cuts through these problems.  Given that it’s easy to assume everyone has gone digital (but I know for a fact that’s not the case), I personally think a hard-copy brochure in every oncologist office that comes from ONE source with pointers towards questions to ask your doctor, where to get trial information and dispelling myths and rumors is a good solution, but that’s just the tip of the iceberg.

So there you have it.  This is more of a blog entry for newly-minted members of our Doomed tribe, although if you are getting first-line advice here I’d recommend immediate seppuku via KFC spork.  But here’s a few things from my personal list of what I’ve done regarding CT’s that may help you on your own path:

  • Talk to your oncologist.  Are they aware of any trials?  How do they prioritize recommending them in the line of treatments?  Have they ever run one?  Do they have in-office folks to help you navigate the process?
  • Read up.  It sucks, but right now the information is everywhere and nowhere.  Go to the biggest news sources for your particular flavor of cancer (every cancer has one, even tiny lil’ Myeloma has several) and read up.  Check the forums.  Make a list of what trials you find, what other drugs (if any) they are using in the trial, if it has a local arm so you can cut travel down, if the trial host is paying for your care while you are in the trial (huge deal), etc.
  • Check out your insurance information.  I know the stuff they give you reads like some alien manuscript, but you should be able to find out at least in a general sense what they will cover for clinical trials.
  • If your oncologist is no help, well, you have a decision to make.  Keep in mind however there are a ton of folks online that would be more than happy to help you, from individuals with experience to groups putting in the work like CureForward, ASH and others.  I’ll be honest, in my opinion and experience if your oncologist (or any doctor) is not your biggest advocate, the most informed person you know about your disease and the most seemingly caring doctor you have, you have the wrong doctor.  Again your mileage may vary, but don’t die prematurely because you were afraid to ask for help from someone who isn’t helping you, or had to initiate your own treatment path.
  • Be pragmatic and don’t fall for the hype (from your doctor, big pharma, or anyone else).  Immunology, CAR-T, virology, CBD oil, cramming Turmeric up your own ass,  whatever … new technologies are coming out all of the time, but don’t let the hype fuel unrealistic hopes and then become a source of crushing disappointment and depressive episodes if your results aren’t the best case scenario.  Not everyone gets full remission or 20 years off of one drug like we’re always reading about.
  • That being said, if you want to try the bleeding edge stuff years before it hits the market, clinical trials are how you do it.
  • Help yourself while paying it forward.  Obviously when diagnosed we are a lot more concerned about ourselves, but keep in mind the drugs you are taking for your cancer wouldn’t be on the market without clinical trial participants.  Done right you’re at little risk and can get your treatments paid for, so give some serious thought to paying it forward yourself by participating.

Lastly, a few links to get you started:

  • https://www.cureforward.com/ Mentioned several times here and the organizer for the chat linked above.  Definitely good information and sounds like it solves a LOT of issues patients have.
  • http://www.myelomabeacon.com/ For Myeloma specifically this is one of the best sites I’ve found.  Columnists, news, and trial information.  I’ve had some great conversations about what I’ve read there with oncologists — be informed about what’s going on with your cancer!
  • Do a search on Twitter for #ctsm and #mmsm.  Especially right now there’s a lot of information and links to follow from #ctsm, and some great articles.  Given the fact that most articles I find on cancer are so jargoned to Hell that their unreadable I think you’ll find tailoring your tweet searches a bit can have much improved results.
  • Look at the follower lists on Twitter once you find a great source of information like @CureFoward, @MyelomaTeacher, etc. From their follower lists you will find tons of sources that will be relevant to you and your flavor o’ Doom.
  • Go here.  Push the button.  Give this to all of your friends who just don’t get the whole cancer thing.  DO IT.

My apologies if I’ve left someone off (just comment and I’ll add to that list) … at some point I really need to put together a “handy links” page.  I promise no more than half will take you somewhere totally evil and unrelated.  I’m altruistic like that.

So there’s my PSA-ish bit on clinical trials.  Dara tomorrow and I don’t have to be there until 9:15am!  Any reprieve I get from waking up at 6:00 am for 7:30 am appointments is a big deal.  PET Scan on Monday at 8:30 am so following up on making sure that’s scheduled is now off the to-do list.  Need to set a reminder to not get the mandatory Starbucks on Monday morning.  Need to listen to more High on Fire this weekend.  Here’s a bonus PSA … if you think that song sucks, double the volume.  Keep doing that until you are buying Matt Pike t-shirts on Amazon or decide that no, really, HoF sucks.

One last thing.  In answer to a message I received, yes I call people with cancer the Doomed (mostly myself).  Part of that is my philosophy on things, part is an homage to Hunter S. Thompson and mostly it’s my sense of humor.  And yes, I like the word “Doomed.” Almost as much as I don’t like people telling me to shift my attitude on my own goddamn disease.  I have a pragmatic attitude towards my cancer but I’m also told by folks on a weekly basis how amazed they are at how good my attitude about this all is.  You may disagree with using “negative” words and phrases regarding cancer and props to you if you do, sincerely — but if you are offended or think I’m doing harm to my own mental fight or others’ against this death sentence by using these things, perhaps, respectfully, my phrasing and your perception of the world are not compatible.

In other words, whitewash your own life, not mine.

Toodles!

 

Saved by the … 1970’s?

I’ve been somewhat avoiding this entry, as ridiculous as it may seem, simply because I’m scared, quite honestly.  Scared about seeing what I should, or want, or need to put down here.  There’s a stark reality to a word on a page.  Something CREATED that you can’t just stuff back into a box.

This is a travelogue, if you will.  Which makes me a tour guide of … myself?  I’ve always found that an interesting viewpoint, whether as a reporter or editor or blogger.  If you’re reading this you’re on a journey with me, and perhaps similar to the anticipation we all get wondering if the traffic you’re stuck in was born just over the hill in smashed cars and blood on the pavement, I have to think in the back of someone’s head reading this blog there’s a knowledge of what we are going to find over the hill.

Here’s the difference between you and I, however.  You read these words, their order and meaning and message devised in my head and placed here as best I can.  Perhaps you get hope from them (that would be a feat), or more likely some information you didn’t have about Myeloma.  Maybe you know me and this is how you stay updated.  For some I know there’s an empowerment in reading and interacting with others sharing their fate, which is why I make sure to answer (I may miss 1-2, sorry) every comment personally.

But for me this thing is something totally different.  It’s truth.  It’s a love letter to someone you’ll probably never meet.  It’s comprised of words once spoken outloud, given birth, that become unavoidable, and once created I can’t shy away from it.  Just the opposite, I re-read these entries ad nauseum.  If they make me tear up I just keep doing it to inure myself, to explore, to learn, to understand me through this process.  To remember — it’s weird going back two years and reading.

And hey, side effect to chemobrain, I have such a hard time recollecting certain things now it’s like reading a whole new blog, laugh.  I should start re-reading my favorite authors come to think of it.  Anyways …

Long way of saying why I haven’t updated in the last few days.  That experience can be so taxing that the anticipation of it can be too much sometimes, especially when my number one method of coping is to compartmentalize and seal until I feel it’s safe to open the vault door and peek inside.  These entries are often the emotional equivalent of blowing open all the cell doors in a Brazilian prison and seeing what happens.

Don’t ever Google “Brazilian prison riot” by the way.  That’s one of those “what’s been seen can never be unseen” parts of the Internet.

Wednesday morning I met with Megan, the nurse practitioner on Dr. Matous’ team (and also with another member of their team sitting in who works with Sonja, the team’s nurse navigator — each doctor at CBCI has their own group of folks).  Megan actually is the reason I’m at CBCI — she’s a friend of a friend’s sister who related to her some unsatisfactory experiences I had had with my former local oncologist and got me in to see Dr. Matous.  Not only is she as sharp as they come on Myeloma but there’s also an underlying level of tangible “caring” that I rarely see in medical professionals.  I consider myself lucky to have met her, quite honestly.

So we have a 45 minute meeting to discuss some things which I’ll save you the narration of.  Here’s some “highlights,” although that’s certainly an odd term for it:

  • We are definitely in the danger zone.  Queue Archer pestering Lana.
  • We are going to continue with the Dara/Rev treatment for a few more weeks (4?) to get some more data and because it’s seemingly very effective on two of the three metrics you watch with my form of Myeloma (IgG, M-Spike) even if the Kappa is going the wrong way.
  • We’ll be doing weekly appointments with a doctor and weekly Myeloma tests now (monthly before).
  • PET Scan time.  Only had one before so not entirely sure what this tells us, but that was the plan BEFORE I told her about some of the pain I’ve had bone-wise lately (skull, lower back, etc.) and once related became even more urgently needed.
  •  The next step for me if this is not sustainable is probably going to be something called PACE (we’ll discuss that in a minute).
  • After Dara, or PACE, I cannot be off chemotherapy.  Every time I have my numbers go to Hell so fast you’d think they had a VIP invite.
  • The step after that *may* be some sort of CAR T trial.  CBCI is most likely going to have one but given the previous bullet point I may need to travel for one to get the timing right — again I cannot be off chemo given what we’ve seen so far.
  • There’s no good way to prop up hemoglobin counts like you can with white blood cell counts, apparently.  i.e., Neulasta, IViG, etc. There used to be and it was a standard of care, but due to heart issues it’s use was severely restricted.
  • An autologous stem cell transplant (someone else’s stem cells) may be on the plate for the future.  Risky and a huge time commitment among other things.  Didn’t even know they did those for Myeloma.
  • I managed to make not one but two medical professionals tear up with one comment.  Basically that I just needed 13 more years, even if it was slogging through chemotherapy 24/7 to get there (we had been talking about living on chemo for the rest of your life versus not even a maintenance regimen).  From knowing me Megan knew pretty much immediately that that was when my daughter turns 18 and explained to the other nurse in the room, who has a young child like Megan and I both do.
  • One of the reasons my cancer may be so frustrating to deal with chemo-wise is perhaps there are not one but TWO clones at work.  That could explain the weird way the Kappa is not marching in step with the M-Spike and IgG.  First time I had ever heard that was even a possibility.

As I remember it those are the main points we hit.  Couple things to dig into from that list.  First, Megan was telling me how she had talked to Dr. Matous the previous evening and he knew my numbers off of the top of his head.  She let me know that’s not the norm and that he cares about me.  That may seem like a very small thing in a very scary list of things, but it meant more to me than anything else said yesterday.  I have a hard time buying that many medical professionals even read this but man, you want a patient to believe in you?  That’s how it’s done.  A little caring moves mountains.  You want someone fighting for you in this, not doing their day job, capiche?

Secondly, PACE.  I checked with a friend with Myeloma doing significantly better than I am and that was news to her as well.  I also don’t recall that one off the list in any doctor’s office of potential treatments.  I’m reasonably sure, since I’m somewhat well-read in Myeloma, that there’s just not a lot of talk out there on this one and doctors don’t even mention it given why it’s used.  The key word I kept seeing over and over again is “salvage.”  It’s a salvage chemotherapy, so in a way a hail Mary pass.  At least that’s how this feels.  We’re not calmly sitting around pondering quality of life issues over IV versus oral chemos and what’s hot now, we’re calling the National Guard and getting ready to light up Berkeley like the Branch Davidian compound in Waco.  It sounds like there’s some variance in the exact cocktail used with this (Velcade or Thalidomide, for example).

So DT-PACE:

  • P = Cisplatin or Platinol.  Mmmm, 1978.  Cisplatin (actually discovered in 1845) is licensed for medical use.  1978: the Sex Pistols play their last show, the Blues Brothers perform their first (on SNL), Van Halen and the Dead Kennedy’s debut albums, and most importantly Iron Maiden hires Paul as their lead singer and records a 4-song demo including Prowler.  Best band ever.  EVAH.
  • A = Adriamycin or doxorubicin.  What year did Nixon resign, Cher file for divorce from Sonny, Neil Peart join Rush and the Ramones perform for the first time at CBGB’s?  1974.  Those two drugs are the same, as far as I can tell; Adriamycin was a trade name for doxorubicin.
  • C = Cyclophosphamide.  Set the Wayback Machine for 1959, Peabody.  Jimmy Hendrix buys his first electric guitar, my dad’s favorite Buddy Holly goes down in a plane crash in Iowa along with the Big Bopper and Richie Valens, and Cyclophosphamide is approved for use.  This one I’ve had before when I first was diagnosed as part of the “CyBorD” triplet (Cyclophosphamide, Velcade (Bortezemib) and that wonderful (not really) Dex.
  • E = Etoposide.  Welcome back to ’83, when Thriller debuts at #1 on the charts, Mick Jones is kicked out of the Clash, the members of KISS take off the makeup, the first Phish show happens and Etoposide hits the market.

The “DT” is Dex and Thalidomide (predecessor to Revlimid/Pomalyst) but it seems like there are variations on this theme (using Velcade instead, etc.).  Only recognize a few of those names?  Yeah me too.  I wasn’t sure what Megan meant when she said it’s an old-school chemotherapy.  More like 800 of them.  At once.  96-hour infusion, only can do this once or twice due to the severity.

In looking at that list maybe I should show up with a giant afro and bellbottoms humming some BeeGees.  CB?  Still got that pink afro wig?

How’d we get here seemingly out of nowhere?

I know the answer, a combination of semi-effective treatments and a few ill-timed but necessary chemotherapy holidays.  I’m still suffering from the whiplash, however.  I went from the, for lack of a better analogy, “softcore” chemotherapies to the “XXX scar-you-for-life and terrify the kids while it kicks your dog” chemo with little to no warning.  There are so many questions this is raising and emotions churning and frothing like some stormy seas out of a novel where people say “yarr” and the great white whale appears on the horizon that I don’t even know which way is up anymore.  It’s given birth to a few feelings, however, that stand out:

Yarr.  I just wanted to say that again since it’s a joke between my daughter and I.

“Knock knock.”

“Who’s there?”

“Interrupting Pirate.”

“Interrupt –“

“YARRRRRRRRRRR!”

Cracks me up every time.  Sorry, your list:

  • I’ve never “feared” my cancer.  That’s an odd realization.  I thought I did, for sure.  Now I fucking do.  So if someone was just trying to make a point with this to not take cancer lightly, I get it.  Seriously.  No I will not start going to church, please stop asking.
  • Taking that a step further, I’ve never felt the grasp of death before.  I think I know more about impending doom than non-terminal peoples after four years of Myeloma, but there’s a big difference between having a concept in your head with some nebulous future date (“eventually this will probably cause my death”) and what I feel now.  It’s gone from 2-D to 3-D, if that makes sense?  I feel like we’re in the “get the paperwork in order” phase of things and I can’t escape that feeling.  Not that my thoughts on it have changed at all (only really care due to Ariana and her future, yada yada yada), but I thought I’d have a bit more time to get there.  That feeling is now gone.
  • There’s a very disappointing jealousy I’ve hid from everyone for a long time.  I get the feeling all of us doomed do this even though we don’t talk about it, because it makes you feel shitty.  It’s being jealous of survivors, those for whom all of the chemicals and years worked.  I hate that because it makes me feel petty and selfish, which is logical.  It’s just so hard reading about how someone survived on Revlimid for 20 years or is now in remission or what have you when you aren’t.  But it’s a full disclosure sort of blog, so sorry for admitting what most of us feel but won’t talk about.

So that’s where we’re at.  Well I’m at; hopefully you, my friend, are not here with me except as an observant whisper in the dark.  I won’t be dropping dead tomorrow, I doubt, but in four years we’ve torched quite a bit of the new therapies and standards and we’re worse off than when we started.  What’s left looks and feels pretty grim to me right now.

Sure there’s hope.  I’m still fighting along with the best medical team on the planet as far as I’m concerned.  I’m taking the drugs, making all of the appointments — ask around and folks will tell you those are the danger signs of giving up (no shows, not taking the drugs, etc.).

I figured something else out today.  My father, upon hearing my diagnosis four years ago, has mentioned a few times since that that was the only time he’s seen me scared.

I realized today I’ve just learned to hide it better since then.

PS:  You know your cancer’s rare when the spellcheck keeps correcting it to “Melanoma.”

Watch, I’ll have that now too and we’ll all go “how ironic.”  Knock on wood.

Last thing that I just recalled.  Don’t read more into this than is necessary but with all these thoughts of death and the timeline feeling like it’s shifted I came up with what I want on my tombstone.  “End of Line.”  Sure, put some family stuff above that, but that needs to be on there.

Tron dork, what can I say.