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.

The “other” fatigue.

When I was a journalist I learned about the concept of “Africa fatigue.” That’s when you read and hear so much about the seemingly endless horrible things happening there (famine, genocide, corruption, diseases, flooding, holy wars, institutionalized rape, etc.) that you become inured to it over time.  “Really, another 50 bazillion people died today in [insert African country name here]?  Shocker.”  Harsh but I’m pretty sure we all do it to a degree, if not with Africa than something else — there’s only so many times you can experience something, much less something happening so far from you that you aren’t experiencing it first-hand, before it becomes commonplace and then boring.

I tend to get “cancer fatigue” a bit. Part of that lies in my coping mechanisms and the rest is simply the obvious — I HAVE cancer. I don’t need to spend 24-7 suffering personally AND time focusing on it in a general sense. I just don’t have it in me.

For months I’ve lurked on Twitter, quietly following the most intelligent voices I could find so that I could keep up with the latest on Myeloma. In the last month I’ve started interacting more and more with some of the Doomed community on there as well, which has been fairly cathartic but hard at times.  You try waking up and hitting Twitter to surf yourself awake only to read 20 stories in a row about child cancer victims who’s doctors have given up on treatments and told the parents “enjoy what time you have.”  Maybe you can handle it but I just can’t.  It’s too goddamn much, especially as a parent.

If you’ll excuse the minor digression, I actually put my foot down Friday.  One account I followed posted up an article that had as a main photo the inside of someone’s rectum. I’m sorry but I’m not a doctor and I have no desire whatsoever to see that anywhere. Use your fucking brains folks, if I wanted to see goatse I’d Google it.

pee-wee-herman

* Not actual goatse pic. Don’t Google that term either, you’ve been warned.

I also had to un-follow a widely-followed person in the cancer world that just had one too many arrogant jerkstore posts last week. I do my best to keep away from those folks especially in the medical field, and the daily “I’m so amazing and this person’s research sucks” posts got to be too much. If you are going to be a dickhead online at least be funny.

That said I’ve also learned a ton and “met” some really amazing folks. I tend to follow people who are original, interesting and don’t just have a feed comprised of 100% re-Tweets. It’s a strange thing that seems almost an invasion of privacy at times because this stuff is so personal and rarely seen elsewhere. Normal people generally don’t stand on a pedestal and unzip their fly in my experience, and those that do regarding their own disease seem to usually have this amazing mix of vulnerability, resignation, sass and communication skills that I never tire of.  It’s real and as honest as it gets.

See?  I’m weird. Same reason I sit outside in lightning storms to feel small in the face of such uncaring ferocity as a good, shake-the-house thunderstorm. Cancer, and the stories about it, remind me of that feeling as well.

Everyone feels like a king until an uncaring universe squashes you like an ant. That’s the major lesson that drives home. Keeps you humble, I’ve found, but what’s more it’s a stepping stone on the path of learning how to deal with Random Number Jesus.

I had to take a break this weekend, however. In my zeal to be supportive and be involved I think I accidentally knocked a hole in the emotional wall that keeps me sane through all of this. This past week’s “real world” stuff didn’t help either with the protein counts, etc. (read last entry for more details on that). I just couldn’t get Myeloma out of my head this weekend no matter how hard I tried. Things feel precarious right now, like I’m a misstep or bad test away from having this go completely south on me. I’m trying to have a good attitude about it all but it’s difficult to ignore a lion roaring right in your face — constant back pain, constant exhaustion (except Saturday when I think that transfusion kicked in and I felt energized), stress about pills (long story I’m stuck in the middle of today with my Revlimid prescription and a Fedex delivery person who forged my name), stress about the PET scan, etc.

Sighville. Pandora, shut your fucking box please. I have to function today.

Well that’s the core dump for the weekend. Not every entry can be puppies, rainbows and ‘graphs that flow into one another and have a pithy tie-up at the end. Now I need to transition so I can mention a few quick things.

But the latte hasn’t kicked in so insert your own damn transition and transitiony music here.

I wanted to share three things I found on Twitter in the last week. Which I’ll do with bullet points so you know it’s important.  MAH GOD HE USED TEH BULLET POINTS, IT MUST BE SRS BIZNESS:

  • First, after a patient Twitter chat I took part in last Friday I was shooting the shit with a participant (@lifeiskitsch) about the X-Files and playing the cancer card when David Duchovny (verified) joined the chat after a particularly heart-breaking tweet of hers caught his eye (we were tagging him and Gillian Anderson in our discussion). He said he was sending her a signed copy of his book and he’d like to meet her at one of his upcoming band’s shows. Too fucking cool. Really made me happy for someone I’ve never met, which is a nice feeling.
  • Second I had a discussion via Twitter with @mpg61, a Myeloma victim since 2011. Matt has an amazing blog with more pictures and less f-bombs (but enough to be respectable). I’m guessing without knowing him that “victim” is the last word Matt would want to be called so no disrespect — you may actually know of Matt because even though he has MM, he climbed fucking Kilimanjaro in March and helped raise over a quarter of a million with his teammates for Myeloma.  Unreal. I struggle to go to Starbucks most days and won’t get on planes. Well-played Matt and thank you for sharing your story and blog with me (and everyone else).
  • Third, I came across someone relatively new to the tribe’s brain cancer wing, @nateroni1984. Her story is moving, for sure, and her Instagram really touched me.  Why? It’s a combination of everything I remember about those first few months of Myeloma — trying to make light of the horror, the tears involved when reality seeped in, putting on a brave face for others, you name it. We all had this experience in some form and her pictorial and Twitter relation of it is both saddening and poignant … but topped with just the right amount of sincere hope that make it such a must-read. Natalie I’m sorry btw I didn’t ask for your permission to write about you first — apparently on Twitter you can’t DM people who aren’t following you or visa versa or something and I figured if you’ve got it out there a few more eyeballs won’t hurt. I’ll remove this is you prefer, however.

I really need to sit down for a few hours and redesign my blog to have a links page, etc. My immediate mental “yeah, someday” procrastination doesn’t work as well with cancer, I’ve found. I also need to gear up for this week as it’s not only Dara week but I have a meeting with my oncology team at CBCI where we’ll be discussing my latest Myeloma metrics as well as the results of my PET scan.  Which I’ve already seen (the report anyways) and have zero idea what it means:

Mediastinal blood pool SUV: 2.1
Liver SUV: 2.2

PET CT fusion images:

SKULL BASE and NECK: Normal radiotracer activity.

CHEST: Normal.

ABDOMEN and PELVIS: Normal.

BONES: Diffuse increased marrow activity likely related to bone marrow
stimulants. No discrete bone marrow lesion.. Mild diffuse increased
radiotracer uptake in the left calf medial posterior muscle likely
relates to physical activity.

IMPRESSION:

No scintigraphic evidence of active myeloma although bone involvement
difficult to rule out given the presence of diffuse increased marrow
activity. No soft tissue disease.

Likely changes related to physical activity in the left calf.

I guess it was too much to hope for to see a report with just two check-boxes, “fucked” and “not fucked yet.” Instead my interpretation is something is stimulating my bone marrow, probably the scintigraphic evidence shoved up my ass.

I didn’t take a lot of science in college, sorry.

Oh one last note, kind of a gripe that I’m going to be a bit careful with because of who we’re talking about. So the IMF hosted a community workshop in Denver this past Saturday. I contacted not one but two folks at the IMF about whether there was going to be an available livestream or post-workshop recording I could watch and got no response. Whatever, that’s fine … I did send out those inquiries a day before.

Here’s my real issue. I have so many ways to stream myself playing a video game or a cam broadcast on my various PCs that it’s almost annoying. Christ I can broadcast myself from Facebook now. Really, IMF, is there nobody who can set up a simple playback stream of your workshops and links to the Powerpoint presentations? I would TOTALLY link the hell out of them. My own oncologist was one of the speakers at this one and I really wanted to hear his presentations and see his slides, but between it being my mother’s birthday and a white blood cell count so low I get hospitalized if you look at me the wrong way I couldn’t be there. Super disappointing. Charge $10 for it, I’ll pay it and you get insta-donations.  Put it on Twitch, which any 12-year-old can set you up with, and there’s a donation system built in.

Seriously though get with the tech, not having this stuff available sucks nuts.

That’s it.  I know this is disjointed — some days I have a point, some I just need to bleach my brain by core dumping everything here. Either way you have a front row seat so thanks and apologies are probably in order, hah. And if not for this entry than certainly for this song, my latest favorite tune to crank. Bought HoF’s entire back catalog last week and have been loving it — which is odd because generally that vocal style is annoying to me, but the riffs are so goddamn hard that it works for whatever reason. Hardcore metal is one recipe line on my “must. stop. thinking. NOW” self-therapy. It’s also the only music style I’ve found that really does get better the louder it is.

Have a \m/ Monday.

 

 

 

 

 

 

 

Alpaca outta f%&king nowhere.

Now four years into this shitshow I’ve decided that the word “fatigue” is my least favorite side effect description.  Fatigue?  Fatigue is what you get when you’ve had too much sun at the Derby party.

“Oh Rhett, ah do declare that I’m a tad fatigued!  Can you find the negro for some more mint juleps whilst ah retire indoors?”

Sorry, that’s how I envision Derby parties: a bunch of white Southern-accented racists in stupid hats.  Your mileage may vary.

“Fatigue” is too dainty (another word I associate with Derby party-goers) a word, and it’s woefully inadequate in describing the narcolepsy-esque exhaustion I’ve had from either/both my disease and the various chemotherapies.  Which I bring up because since I started Dara, my hemoglobin is so low that I’ve had 4 transfusions in the last few months. In fact I’m typing this in on my phone (ugh) from an infusion room chair while waiting for some CBC results to see if I need another … I’ve been dead on my feet all week.

And on that note while dealing with the extreme pit of narcissism that is my mother on the phone I was just told my first blood samples, which they took again due to what they thought was a clot in the tubes, weren’t actually clotting in the tubes.  It was that there’s apparently so much protein in my blood it appeared to be clotted.

Sighville.

Bought the kiddo a stuffed animal from the gift shop while I waited for a hastily-scheduled transfusion appointment.  I know my wife thinks I spoil my daughter but there’s a purpose beyond just loving to give her stuffed animals — I think it helps when I’m delayed at appointments in the hospital or oncologist to bring her something fun to turn the experience positive.  My logic is simply that in doing so, I can hopefully erase any negative connotations for her right now with all of this.  She has been taught about death, and she knows I’m sick, but she hasn’t put the two together yet.

I just can’t go there with her quite yet — not only does she not have the maturity at 5 to really come to grips with this, I don’t think, but I had to soften it somehow since we obviously had to talk to her about it.  Between the constant doctor visits and people (irritatingly) talking about it in adult terms in front of her, it’s not like she didn’t know something was up but more importantly we were afraid she’d think I had something she could catch.  I’ll just take those tears for her in the meantime and she can have a stuffed animal instead of worrying daily that daddy won’t be coming home that day.

Speaking of tears, I’m not a giant fan of  trying to hide them in an infusion center so I’m out.  Have fun, hug the loved ones and thank you, whoever gave this, for donating the blood I needed today.  And I’m sorry for what I and some of Colorado’s finest medicinal plant life are going to do to said blood after the kiddo goes to sleep tonight when I try to relax and erase this goddamn day from my brain.

Oh but to end on a laugh, whenever something happens to me that’s a surprise (like this transfusion) my mind immediately goes to this, one of my all-time favorite memes.  Enjoy …

mekjol8

I lost this title in traffic.

One of the annoying things about chemobrain for me is I can’t hold onto thoughts any more.  I know I *had* a good title and first sentence for this entry written in my head but somehow between the hospital and my office I lost it.

I blame Dan Carlin (the Podcaster).  His two shows, “Common Sense” and “Hardcore History,” are guilty pleasures of mine and I was enjoying one on the drive to work. DAMNIT DAN CARLIN*.

* Not really, I love Dan and wish he was our President.

While I’m thinking about it, I’m not sure I’ve ever really delved into my particular flavor of chemobrain.  Perhaps most annoying is that I’ve almost totally lost the ability to digress and then get back to my original train of thought. I’ve been trying to train myself to not do this anymore as a result because the number of times I have to ask “I’m sorry, what was I talking about?” is seriously embarrassing.  My vocabulary has suffered as well — I find myself struggling to recall words I know I used to be able to find effortlessly.

I’ve said it before (I think in the last entry, come to think of it) but when all you have to trade on is your mental faculties, watching them decay is pretty dismaying.  But you know what?  The hell with it.  There are things in life you can fix, and things you can’t. I’m not going to quit treating my disease so that I can recollect and use “antediluvian” in a sentence.  I’m already tempted to just speak in animated gifs and let people wonder what I’m trying to convey anyway.

uw0n5gv

Oh, PET scan versus stupid rambling.  Had the test this morning, my second ever.  It was fairly pleasant, really. Which is odd, right? We have to do so many unpleasant and demeaning things in this war against the big C that a little Monday morning RADIATION before coffee seems like no big deal. Got the injection, had a nice chat with the tech and promptly fell asleep in the chair.

Damn you, warm blanket of warmth and sleepy warm goodness.

And damn you cancer for making the extreme so commonplace that I not only can sleep through something that by all rights should be terrifying, but instead be thankful that I got some extra rest instead of having to sit at work.

So weird.

Anywho, after 45 minutes to let the radioactive sugar (think that’s what they use) percolate, the tech had me go into the giant expensive machine and I again fell asleep during both scans (lower body and upper body were done one after the other after shifting positions).  Really the only thing that really bothered me about this morning is it occurred to me that it’s total bullshit that I’ve now been irradiated several times by professionals and I STILL don’t have any cool superpowers.  How lame is that? I can’t even have like the ability to instantly find a good ramen shop anywhere?  I could be Captain Umami or something. As terribad as the last Avengers movie was there’s probably room for me now on the team.

*sounds of Avenger’s doing Avenger-y stuff: crash clang bite meow bzzzaaappp squish squish*

*cut to Captain Umami noisily slurping some shoyu ramen and giving the camera the middle finger*

Once finished with the PET scan I wobbled to my car in a sleepy fog and went to Starbucks for the morning triple venti no foam soy latte.  I almost wish I had done the recommended blood transfusion at last Friday’s Dara session but with the later-than-usual start time I wouldn’t have been home until like 7 pm at 2 hours per bag.  The PA that met with me pre-Dara last Friday, Sarah (who rocks socks and has almost as many “ooh, shouldn’t have let the kiddo listen to that song” stories as I do) said my numbers were iffy in terms of needing a transfusion but I could wait a week. As a result, zero energy right now to the point where I’m tempted to see if they can fit me in earlier than this Friday.  Hell I got tired doing my own laundry this weekend.  And I’m not in THAT bad a shape.

Also if my 5-year-old cutest-ever princess of a daughter suddenly notes very seriously that “Wu-Tang Clan ain’t nothin’ to fuck with” to you, please just nod knowingly and let me know so I can feel the appropriate amount of guilt and then figure out how to blame my wife. Thanks.

So back to ze PET scan. As I get back into the car at the Starbucks parking lot I grabbed the card o’ discharge instructions.

There was one.

“Drink lots of water.”

For radiation?

Look I’m not a nuclear physicist but something about “drink a bunch of water” to get rid of being irradiated just doesn’t sound right. I mean I’m sure it’s probably safe.  That’s why the techs bring the injection in a metal box, have the needle to do the injection encased in metal and have the nuke picture everywhere.  But you?  You’re fine! Just drink some water.

HMMMM.

Curious to see how much this Monday morning adventure cost.  Well cost my insurance company, at least until they stop covering me.  Which I’m not even going to get into because there’s so much hype and bullshit out there right now about this TrumpCare business that it’s just not worth it to dwell on here.  For reference I believe ALL politicians are inhuman soulless scum and this is just the latest example, but I really don’t want to get political beyond that. I hope it works out and even more I hope those who created this new mess, instead of thoughtfully fixing what was already in place, know (as new Twitter friend @MightyCasey recently put it to one of her local politicos): Winter is Coming.

But whatever.  Just like being irradiated pre-latte there are things I can influence and change, things I cant, and this is not a platform for either. I am truly sorry for those of you who were severely affected by anxiety over this stuff and probably continue to be. As someone who has struggled for the past four years since diagnosis with many of those around me adding to my stress instead of trying to help relieve it, I feel your pain, and last week was scary for me as well.

It has, inadvertently, added fuel to the “drug costs are too high” argument though. I found this article this morning which I really enjoyed.  I love how big pharma tries to play this issue off on PBMs and won’t tell you the “real” cost after discounts, PBM backroom sorcery and other assorted bullshit FOR YOUR OWN GOOD, CITIZENS.

Jackasses.

As someone who not only has taken a lot of cancer drugs but who also takes Revlimid and recommends Celgene stock for my clients, it amazes me that this is allowed. Then again perhaps not, given that we’re talking about the largest lobbying group by political donation in the States. Who are also fighting (along with police unions, prison unions, etc.) marijuana legalization because being on the wrong side of history is fun for the whole family and who cares about suffering, people!  Give those whiners opioids and tell them to shut the fuck up.

Not going there (marijuana policy) today, been in a good mood all weekend even with the exhaustion and that’s a HUGE hot button issue with me. A little snark and it’s time to move on.  To …

To … um, hmm.  I guess that’s it for the core dump today.  I probably needed some crafty pithy thing to say next but I’m just too tired to be pithy today. I’m pith poor (which is much more amusing if you say it in Mike Tyson’s voice). So here’s to hoping my PET scan has something good to show us and when I hear something I’m guessing you’ll be one of the first to know.