In-patient VTD-PACE, last night.

So here we are, last night (knock on wood) of the in-patient portion of VRD-PACE. Yeah I’m about ready to go stir crazy here so good timing.

Honestly, and kind of strangely, I’ve been in a really good mood all week. I’m walking a lot more than I usually do in the hospital (granted, I’ve been in 6-7 times in the last year for respiratory stuff and walking was not on MY top 5 list on those trips), cheerful.  Mostly bored, really.  I think the hardest part of this has been a combination of the steroids and the isolation — for all that I and others were worried about side effects, those apparently come next week. This week at Presbyterian St. Luke’s has mostly been about keeping occupied and not nauseous.

Although if you’re going to do inpatient chemo for 4 nights and 5 days, do it RIGHT.  Please note the following picture will offend and perhaps increase nausea in the Doomed who can’t look at any non-raw non-GMO non-vegan non-flavorful meal.  Or Darth Vader:

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The despecialized (un-re-edited) version of Star Wars and a 12″ from Fat Sully’s. Probably not the best anti-nausea fighter. Or the healthiest meal. Or the easiest to eat in a hospital bed, for that matter.

I care.

Awesome ‘za.

Hey when you live sort of in the sticks, being downtown with 3rd party delivery service is like a dream come true. Had a wicked bowl o’ ramen last night with some pork buns.

So yeah, not too bad really. The steroids have been the hardest medication to deal with so far. Forty milligrams a DAY of Dex has taken me beyond restless leg syndrome and into a Steve Martin comedy bit.

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Once I get to sleep I can stay there like a zombie, but being a night owl it’s soooo hard to actually get to sleep here for me. Trying an Ambien tonight … not a giant fan but I really cannot take another night of 40 laps around the onco-ward all tired but so jittery I can’t shut my brain off.

Also thanks to all those who swore to sneak me in some, erm, greener products. Appreciate and I love you but probably best if I don’t get booted out of the hospital, lulz.

Had some visitors today which was awesome (thanks!) and … I dunno what else, really.  This much time in a hospital all flows together until you aren’t sure what day it is and whether you’re coming or going, you know? I play games, watch movies off the home theater PC on the laptop and try not to puke.  I almost got caught today, that sudden salivation feeling you get, but the nurses responded so quick it was laughable.  They really have been great here: Julia, Tara, Campbell, Shasta, Rita, Kellie (note to self, check that list). I have to come in Sunday, Monday and Tuesday (FFS) for appointments so I’ll bring them something special.

You spend a lot of time thinking in the hospital, or at least I do. I’ve been wondering lately if cancer is just how we die now. In lieu of being eaten by saber-toothed tigers maybe this is the “new normal?” It’s hard to argue with some of the startling facts you find of incidence rates these days. Granted I would prefer, given the choice, of going in a slightly more pleasant way, but perhaps this is what we have to get used to. I can accept that, I think. In fact really the only cancer that truly gets me down, that I have no defense against, is childhood cancer. As mentioned before it’s just too goddamn much, too unfair.

I’m also having trouble not falling into the sheer hate aimed at the GOP lately. I try to see the best in folks, if I have time, but it’s been really tough for me lately.  I’ve always been a fiscal conservative and socially moderate agnostic, so I left the parties behind decades ago to force them to market better candidates to me.

Yeah, we see how well that plan worked out.

Seriously though — I’m reading an article today about some Washington Congresswoman and you just know, you KNOW, that if one of her three kiddos was diagnosed with our special sort of fun she’d be the first in line voting NO on this crap. Instead she’d be out sponsoring bills for medical marijuana, better healthcare, etc.

It’s just so fucking selfish, and as I come closer to the end — even if not a cancer-based one, who knows? — I find that flavor of selfishness so fucking disgusting that I just want to slap these people back to reality.  Why can’t they leave what’s in place there and just FIX it? That gets you re-elected. This scorched Earth policy is not. And as I reach further out from this little room on Twitter and Facebook and read story after heartbreaking story it becomes harder to control my disappointment and anger. Representative government, indeed.

If we don’t try to keep each other healthy, what’s the fucking point?  To die with the most toys like some Egyptian pharaoh?  For the love of the Almighty (whatever), c’mon already.

I don’t get it. And I apologize, for what it’s worth, for being a tiny bit political here — this week’s isolation has brought it out of me a bit on Twitter and I don’t like it.

Anywho, going home tomorrow night — my 24-hour chemos end at 4-5ish pm and then I’ll … well, “bolt” is a bad word for being released into southbound 5 pm Friday traffic, but I’ll be bolting as much as I can =)  I miss my daughter and wife, the comfort of their hugs. How they smell.  That sheer “rightness” of being home with them where I am supposed to be. I wish Mischief was there to greet me too but that’s a story for another time.

Talk to you soon and thanks for the kind DM’s on Twitter, comments here and other stuff — it means more than, well, actually it means what most of you already know.  but it’s pretty new to me so thanks and hugs.

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:

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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.

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