Dara, latest concerns and general life updates.

I’m about to embark upon week three of the Dara treatments.  So far so good — I almost feel guilty saying that because I know some chemotherapies are truly toxic to patients, but this new cocktail hasn’t been terrible.

And yes I know Dara is not “technically” a chemotherapy.  I hate semantic games.  Besides taking Revlimid with it kind of makes it a chemo in my book.  As does getting it at a cancer clinic.  When I have cancer.  So if you are about to correct me in that really Dara is  immunotherapy and blah blah and then you get this sudden prescient feeling that I want to punch you in the nose, well, go with that warning.

So far only three side effects have really gotten on top of me, although this early in and with most of my previous treatments having cumulative effects who knows how long that will last.

One is just the fatigue — I blame Rev for that but for all I know it’s this Kraken of a disease letting its presence be known (hard to differentiate, but Rev and Pomalyst made me borderline narcoleptic).  Also the leg discomfort, although I think we figured that one out this week.  I had the monthly IViG infusion this past Monday and in talking to nurse Amy that day about it we decided to try just doing half the Benadryl dose to start (25 versus 50) to see if it worked and … it worked!  No more annoying leg tingling.  Going to ask Friday for the Dara IV if we can try the same thing.

The last side effect is my voice.  When I was doing weekly 40 mg of Dex I would lose my voice a day or so later for a few days.  Now with whatever the steroid is they are giving me with the Dara (not Dex) I lose it for a full week.  Kind of annoying but I’ll take that over being rewired into a psychopath.  My personal life continues to improve (knock on wood) since getting Dex out of my life so I’ll take that trade any day of the week.

BTW I’m still taking 2 4 mg Dex’s a week … one the day after treatment, then one two days after.  On infusion day however I get something else, the name of which of course escapes me.  I’ll try to remember to snag it and the doses tomorrow.

Last week I had severe back pain on Wednesday but it hasn’t repeated itself, so marking that one off the list of side effects for now.  GI’s doing really well, although I have really had little to no appetite since the January colon resection.  It occurs to me to question at this point whether I overate due to depression caused by the Dex/whatever else, if this is a function of my stomach bacteria being all messed up between the chemos and surgery, or something else.  Not complaining yet, however, as all of my clothes fit better.

On to deeper thoughts.  While we have no idea yet (too early, according to Dr. Matous) if the Dara is working, my brain finally put together the variables that led up to this decision and the conclusion is somewhat nerve-wracking.  The original plan was to wait to try to get into a clinical trial doing basically the exact same regimen we’re doing now.  Instead “we” just decided to move ahead several weeks ago.  Being an analyst by profession it’s odd that I didn’t run that decision through my usual gauntlet of why’s and wherefore’s , but something clicked on its own last week — I’m pretty sure the decision not to wait was made because my #’s jumped so high during that chemotherapy break.  I finally saw my M-Spike at my meeting last week with Dr. M. before the second Dara treatment and, um, “wow.”  Highest it’s ever been “wow.”  Like 6+.

The jump my pre-cancer mind would have immediately made that took me two weeks is the implications of that.  If this treatment doesn’t work, which we won’t even know about for another few weeks I think, I’m kind of fucked.  Well more fucked.  Fucked-er?

I like F-bombs by the way.  Sorry if that offends anyone or seems uncouth.  Fearing useful words seems silly to me but to each their own.  At least that’s the pseudo-intellectual response prepared for when my daughter inevitably releases a torrent of them at school someday and I have to explain how that’s pretty much my fault.

Digression reined back in … so that’s my interpretation, anyhow (“fucked-er”), but follow me here.  When my M-Spike was lowish (lowest I ever got was about 1.4, I believe), everyone seemed happy just treating this — well if not casually, then with the lack of ZOMG WE HAVE TO TREAT THIS NOW STAT BZZZ BZZZ HEWP HEWP that you always assume is the case with cancers (and sometimes is).  I was told again and again how it’s better to have a gradual trending down, although my understanding is that at least until recently about half the Myeloma experts wanted the lowest MRD (“minimum residual disease”) as possible and half were good with the gradual thing.  We had options, as well — if something didn’t work, like Ninlaro or the BiRD thing (mixing Rev/Dex with an antibiotic), no biggie.

However, now things are a bit more dangerous.  The bad #’s are super high, and presumably are going to go higher or stay at this heightened level if the Dara does nothing.  While there are certainly more options to switch to, that does tend to trim the choice and immediacy of treatment options a bit, logically.  Been pondering that a lot lately.  Our wiggle-room, as it were, has been significantly trimmed in that a failure at this point may take us to a place that we can’t come back from so easily (organ damage, etc.).  Up until now that has been more of a nebulous concern than a real one, but reality has a way of sharpening the picture on you at times.

Thankfully I’m in a good head space — I really do believe that Dex was the primary cause of most of my mental/emotional ills for the past several years, or at least the catalyst for quite a few.  So I take things in stride, I’m extra nice to folks and double-check everything I’m saying/doing before opening my trap.  I need to get back on the Androgel ASAP as well — kind of took myself off that, which was not a great idea but it is what it is.  I get into this self-sabotaging place sometimes where I know things are a bad decision and do them anyways, seemingly in spite of myself.  Never figured that one out.  I also need to get back on the calcium / vitamin D regimen as well — that one I do know why I stopped though, I was eating horse pills and got sick of it.  Have to remember to research that this week and find a better solution than giant chalky white pills I’m mentally balking at swallowing.

Back to the TRT (“testosterone replacement therapy,” sorry for the jargon), I was listening to a podcast this morning with a retired MMA fighter talking about how folks that were forced to stop using it when TRT was suddenly banned in the UFC (thanks Vitor Belfort!) after being allowed caused a lot of depression in those fighters who just stopped using it.  In case I forgot to mention it somewhere along the line my testosterone dropped way below where it was supposed to be so I started doing the Androgel thing but was terrible about keeping up with it.  Chemo may have done that or I had low testosterone before, no way of knowing now.  Either way I need to be more disciplined about this stuff.  I’m always on it with the chemo drugs, but the ancillary stuff not so much.

Still waiting for someone to do something about the sleep test I did … this is somewhat unprofessional at this point.  Need to remember to ask about that tomorrow at my infusion as well.

I know this is long but it’s been a week and I’ve done a lot of thinking lately, so excuse me a few more minor rambles if you will.

I hope I am not broaching a confidence here, but I received a message about a friend with cancer last week and it’s been on my mind a lot lately.  I’m going to repost it here, albeit with names removed, because it scared me more than a little.  It’s easy, at least after four years of this Myeloma existence, to forget that other types of cancers are not as treatable as mine can be:

Hi everyone. I wish I had good news to give you all, but unfortunately that’s not the case. The cancer is spreading all over and pretty fast. Each week I have new pain. I’ve tried everything that traditional western medicine has to offer, and there aren’t any options left.

I did receive a dose of Avastin, but one of its side effects is preventing me from getting it again. It weakens the intestinal walls and I have a tumor that is growing through my intestine.

So, I am planning to go to Germany for an immunotherapy treatment that isn’t available in the US. It’s costing me a huge portion of my life savings to do this, but I figure there isn’t really a better way to spend my money. I remember my mother once saying, “you can’t spend it when you’re dead!” [REDACTED] is coming with me and we leave in a week. We will be there for one week to start the 1st third of the treatment and then I will finish the last two thirds at home.

I’m very nervous about the precarious situation with my intestine, and I have so much cancer in me that this vaccine has to pretty much perform a miracle. I think it’s time to pray for a miracle everyone! I will update you all when I get back.

Sigh.  I know I’m being opaque here but I really don’t want to overstep a friendship by outing a friend, so please keep them in your thoughts.  And if you do read this I love you, kiddo, and I’ll have you in my thoughts.

On the bright side I was just this week corresponding with an old friend with prostate cancer who at least sounds like they are doing well (checkups every six months, if I remember right, so they’re either not too concerned or their insurance sucks).  Was more relieved than I thought I’d be at that news — I don’t see a lot of positive cancer news around me, so that was a pleasant surprise.  I hope people know that even if I’m not in touch as often as I used to be that they are always in my thoughts.  It’s a weird thing, this cancer life — so easy to disconnect accidentally.

On a slightly related divergent stream it’s strange as humans to contemplate the end of our existence.  I’ve been buried in Mass Effect: Andromeda since Sunday (thank God for gaming laptops when you have all-day infusion appointments) and one part of the story is the main protagonists mother dying from cancer and a memory of the parents discussing it.  Having lived 46+ years as the usual poster-child for ironic outcomes it concerns me that now that things are going well emotionally and mentally it’d be typical that I die from this now-ish.  Not that I’m looking for that outcome, mind you, I’ve just learned to read the tea leaves of my life a bit over the years.  Hopefully that’s just a thought and not a thing and we’ll leave it at that.

What else … oh.  Trader Joe’s is the greatest source of infusion-day snacks ever.  EVER.  Seriously, I got these amazing apple breakfast bars there and the cutest mini-bries ever.  Like a bite-sized full brie.  They’re adorbs, as a friend might say (and congratulations to you, NURSE Kate!).  LOOK YE AT THIS MINI BRIE AND DESPAIR.  OR JUST BE REALLY HUNGRY:

img_0719

Cutest.  Brie.  Ever.

I’ve probably mentioned it before but I have a hard time justifying the horrible snacks they have at infusion centers (full of chemical crap) with the fact that eating that stuff has probably given at least a few of these people the cancer they are there being treated for.  At this rate however I’m going to be the weirdo there in my infusion sofa chair working with a charcuterie and cheese plate.  I’ve started bringing Izze’s for the fridge too.  The nurses put an extra sticker from my blood tests or something on them so they look like prescription Izze.

Small things make me laugh.

Alright, brain dump complete.  More news as news becomes news.  BTW I’ve been linking some interesting, and more importantly understandable to mere mortals, articles on twitter.  Take a look sometime — I follow about 50 or so Myeloma experts and news sources and cut out the people that just retweet everyone else’s stuff, then pick the things I find interesting, so hope you do too.  Toodles!

 

Straightening out the curves.

Thanks to input from a friend I decided to move my blog from Blogger to WordPress, which has been pretty easy.  Not so easy, however, has been the emotional impact of having to go back and read the whole thing to tag everything right, get the formatting fixed, etc.

Whoops.

In doing so, however, I realized there is a lot of information missing, gaps in the story that I should probably fix.  I know I don’t have all of the information some want readily available — I think I’m a bad blood cancer patient, honestly.  Everyone I talk to leads with their numbers like they’re introducing themselves as Patrick McGoohan’s Number 6 from ‘The Prisoner’ … “I am M-Spike 1.9 IgG 2,400,” if you will.  Me, I barely pay attention. What difference does it make?  I know the trends.  I have an incurable but treatable cancer, which sounds good except when you’ve already blown through several treatments in less than that many years you start wondering just how “treatable” it is.  Plus if I knew my #’s better I’d be a walking ball of anxiety.

I often ponder putting together an Excel spreadsheet tracking it all, the typical “hi, I work in finance” answer to the world’s problems.  Much like a surfer waiting for a wave to ride, as anyone who partakes can tell you I’ve been waiting for a good solid Dexamethasone blast o’ energy to do that.  Have a box with all of the lab results and paperwork just waiting for the chemical motivation to kick in.

So of course I just got taken off of Dex.

Someday, Excel, SOMEDAY.

Dex, for those unaware, is the steroid they add to EVERY (seemingly) chemo treatment I’ve seen so far for multiple myeloma.  My understanding is it increases the efficacy of the chemo drugs, allowing for a lower chemo drug dosage?  Either way with very few exceptions I’ve been on this crap for almost four years now, and sometimes if you get the timing down you can be super productive.  I cannot tell you how many times I’ve re-organized our pantries, the garage, the spare closets … great drug if you don’t mind the weight gain and ‘roid rage that accompanies it.

Anyhow, we’ve entered rambling town, so let’s rein it back in a bit.  Like I was saying,  when reading back through things I found a lot of gaps and events that don’t make sense unless you know a bit more about what was happening at the time.  While I don’t write here to tell a clean, linear story, I bow to the logic that one needs to be told at least to a certain degree.  So a few things that I think will help color in the gaps:

  • Diagnosed in mid-2013 when some GI-related blood tests for recurrent diverticulitis showed red flags.  Went to RMCC at Rose for further testing, second opinion at the Mayo Clinic in Rochester, MN with Dr. Arleigh McCurdy.  Decide to have MC “take over” my care with the local oncologist, Dr. Alan Feiner, at RMCC in charge of administrating everything locally.
  • Began CyBorD chemotherapy, consisting of Cytoxin, Velcade and Dexamethasone.  Velcade was done at RMCC at Sky Ridge, the closest RMCC to my office / home.
  • Dr. McCurdy quit the MC for husband’s job but recommended her colleague, Dr. Joe Mikhael, at the Arizona Mayo Clinic.  Went down to meet with him, have him take charge of my care, and plan for a stem cell transplant.
  • Began therapy locally, and eventually anti-depressants.
  • Temporarily move to Arizona in February 2014 for autologous stem cell transplant (“SCT”) at the Mayo Clinic (Day Zero = 2/26/2014, some consider that their new birthday for some reason).
  • Back to Colorado in late March 2014 (30-day post transplant mark).
  • Summer 2014, 100-day SCT results don’t indicate remission, Dr. Mikhael begins Revlimid with Dexamethasone as a treatment.
  • September 2014, lower Revlimid dosage (too hard on my blood cell counts) from 25 mg to 15 mg.
  • January 2015, switch local oncologist from Dr. Feiner at RMCC to Dr. Matous at CBCI.
  • February 2015, Dr. Matous adds Ninlaro (oral version of Velcade) to Revlimid and Dex therapy.
  • Summer-ish 2015, Dr. Matous ends Ninlaro, adds Biaxin for a few months (BiRD).
  • Tried to wean off of Lexapro (the way you are supposed to).  Bad idea, turns out I was relying on it a lot more than I thought!
  • May 2016, start clinical trial for Pomalyst, Dex and ACY-241.
  • Mid-2016ish begin intravenous immunoglobulin (IVIg) since I’m getting sick (pneumonia) on almost a monthly basis.
  • October / November 2016, decide to stop going to Mayo Clinic.

So that should clear up a few blanks, anyhow.  Again it would probably be more helpful if I had all the #’s handy to show my stats at some of those bullet points, sorry.  I also feel like there’s a lot that happened in 2015 as well that I’m forgetting but I wrote nothing down — let’s just call 2015 a rough year and move along.  So mix in 4 hospitalizations for pneumonia in 2016, 3-4 diverticulitis attacks and here we are ready for a stomach surgery and off any chemotherapy (and out of that clinical trial).  That should bring things up to date, but thanks to chemobrain I may add to this later.

Oh yeah, the Mayo Clinic decision at the end there?  Given that I was in the clinical trial this year and Dr. Matous and Mikhael were pretty much eye-to-eye on everything to begin with, I made the call to can the MC trips after having to cancel two at the end of the year due to illness.  I love Dr. Mikhael but it became kind of silly for me to blow $1k or more every three months while in the trial to go down there and have him look over things that we couldn’t really change (since I was in a trial).  Perhaps someday I’ll go back but I have full faith in Dr. Matous and CBCI for now, and if I do another SCT it will be at PSL here with the CBCI crew instead of in Arizona again.

Shame, I’ll miss the banana bread french toast at Butterfields and Z Tejas.  And renting a Mercedes from Sixt — sometimes along with “food for the soul” you need an auto for the soul as well.

I wanted to address something from a comment last week because I’ve been pondering it the last few days.  In it the mother of a friend who is going through chemotherapy for another form of cancer noted that she didn’t know how I could “bounce back” from a failed trial.

Here’s the happy smiley cancer answer, which I’m posting in this blog from atop Mt. Everest after doing a free-climb without oxygen for blood cancers right before a helicopter whisks me away to a raw vegan meal so I have some energy for the 1,000k or whatever marathons are called now I’m running in this afternoon and then tonight where there’s a photo shoot for just my smile because gosh ducky darnit, I’m just so happy and lucky to have cancer and yay puppies!  There’s always another wonderful chemotherapy to try, and we’re all sure the next one’s going to have less side effects and I’ll be on it 20 years from now!  Hey here’s my two dogs now, Hope and Cure, to tell you in doggy sign language about how me having cancer has improved their lives!  So buck up, little trooper, there’s nothing to worry about!

Have you met that person yet?  They always seem fake to me.  I know that’s unfair, but I can’t help it.  Nor can I help wanting to punch them in the nuts.  People like that, in situations like this, make you feel even worse than you normally do in my opinion.  You can’t really say anything either, because we’re all fighting the same battle.  Hell I envy those people, although I question whether they really exist — either way it doesn’t work for me.  Either it feels like I’m lying to myself, or I’m lying to myself.  So how do you really deal with bad news on this wonderful path we’re on?

Anyways, here’s the secret:  I don’t think about it.

So just don’t think about your cancer, folks.  Next question?

Really though, that is the answer.  This is a horror show that never ends.  It doesn’t take a day off.  No matter what I do this cloud doesn’t go away.  It’s in every car I drive, every waiting room, every ceiling tile I stare at in a hospital.  It sits next to me at lunch, picks the radio station and next song on my commutes.  I strap it in right after Ari is in her car seat, and I tuck it in at night right next to me.  In fact there’s only one place I’ve found so far it doesn’t penetrate on its own, and I guard that jealously because it’s the only real relief I’ve had in almost four years.

I will die from multiple myleloma, most likely.  My daughter’s daddy will be taken away.  And if that’s not bad enough, because I’ve always had guilt issues, I feel a CRUSHING amount of guilt over that fact on a daily basis (the daughter bit).  It taints every possible thing I do, bar none.  So I’m driving to, say, work, and instead of the usual daydreams you’d get doing that I get a sudden image of my daughter crying in some hospital about why daddy didn’t take care of himself better so he didn’t die.  Or I replay actual conversations I’ve overheard between my daughter and wife about how daddy can’t play right now because he’s sick and needs his rest (that happens more than I’d like).

I can keep listing those, but this isn’t Monday Depression Spiral with your host, Rich.  How do you deal with the constant stream of disappointment?

Simple. You don’t.

What else can you do?

Should I blast out of my chair in the doctor’s office, shake my fist at the sky and scream “Why, WHY??!!” in some Oscar-winning performance every time we swap to a new chemo?  That just sounds exhausting.  Maybe I could shout about how it’s all so unfair?

So I suck it up, get in the car, try not to think about my daughter and if I do, save the tears until the sunglasses are on and just drive, man.  Music up, all energy on banishing any thought.  Just another day.  Don’t think.  Do.  It’s just a day, just a moment in time.  Because in the end, and this is really the point, I have to function, regardless of what LabCorp or a doctor says.  I have a kiddo, and a mortgage, and responsibilities.

I am going to die from this.

“Oh well.”

Does that seem cavalier?  I’ve been dealing with the concept of my own demise daily since I was diagnosed.  I don’t want to die (well mostly I don’t), but I’ve had almost four years to come to grips with the concept.  I’m not surprised anymore.  Trust me I’ve gone over every possible permutation, scenario … it just doesn’t bother me a hell of a lot at this point.  So what is the point of stressing about a test result, or a new chemotherapy regimen?  I worry more about the logistics and side-effects; the need itself is no longer a concern.

A failed test?  Man I’ve seen so many horrible test results in the past few years it’s almost funny to me now.  “Yep, still on the train to Suckville.  Next.”  What else do you summon in protest when they’re ALL bad, except dark laughter and a few tears snuck in when nobody’s watching?

I have my moments.  I have entire weeks, as my wife can tell you.  But most of the time, regardless of how dark it gets inside, I try to keep it positive.  Who wants to be around negative people all the time?  So I tell black jokes about my health that are probably uncomfortable for people to laugh at (my wife hates those) but make me smile while I try to ignore the situation and just do what I can to make it through the day.  I don’t think more than a day ahead as I’ve found that leads to thinking about things that can blow major holes in the emotional walls, and I breathe a lot.  Lots of sighs too.  You can’t really do anything else.

So that’s the answer.

You get used to it BECAUSE YOU HAVE TO.  Because responsibilities, and guilt, and all the other fun things you’ve brought as baggage (or wreckage) to the party.  Because if *I* can’t deal with it, how will anyone else dealing with my life?

Tony Robbins, I am not.  Sorry.  I’ve been asked some permutation of this almost since the beginning and it’s the only answer that rings true to me anymore.  You deal with it because there’s no other choice.  If you want to take into that cancer fighter’s angst and let the world know how you’re going to beat this goddamn thing, more power to you.  If you want to stay in bed all day bemoaning your fate, hey, that’s your life choice and it’s not mine to criticize — trust me I get it.  Me?  I just try not to think about it.  I already have, do, will.  I’m far more interested in the few parts of my life I can salvage outside of this shitshow than to dwell on it any more than I already have to.

“It” doesn’t get better.  I do, at rationalizing, being pragmatic, avoiding the disasters and trying to stay positive, if possible, but at the least stay standing.  I can’t do more than that.

“Why didn’t daddy take better care of himself so he’d still be here?”

I do that to myself a lot, have that conversation that is. This situation constantly leads to these sketchy little daydreams, envisioning on a micro level what the world will be like when you’re gone. I think I did that before this all began, but death takes on a much more real and imminent feeling with a cancer diagnosis.  It causes guilt, immense amounts of it, that are totally unfair but that you have to deal with.  I wonder sometimes if a lot of folks sadness about cancer comes from that.  On the bright side at least I know this is just a mental game being played and to not wallow in it too much.  But if you can’t accept the truth, as painful as it is, then what can you accept?

It’s because I just didn’t, Ariana.  Because I was selfish.  Because I knew smoking and chewing tobacco was a bad idea and did it anyways.  Because I knew that that food was fucking garbage but ate it anyways.  Because I chose to ignore that all the chemicals and preservatives and food colors were most likely not doing me any favors.  Because I had wifi and wireless signals caressing my DNA for 40+ years and who knows what impact that had.  Because I drank too many Diet Dr. Peppers and touched the wrong bathroom door handle. Because I never thought it would happen to me.  Who knows?  In the end because I was weak somehow, and the giant invisible hand of Darwin or [insert deity here] decided to clean up the gene pool.

And I will be sorry, and feel a guilt so large that nothing can assuage it, every second of every day, until the day they take me from you.  But until then I’ll try to just breathe and do what I can to stick around a lil’ bit longer, spoil you a bit, and see what happens to us.

So here’s to the next chemotherapy, bring that fucker on.

New chemo (Ninlaro)

Chemo regimen number three … adding the recently FDA-approved Ninlaro (Ixazomib) to Revlimid and dexamethasone. A dry chemo that brings to mind rich floral, earthen mineral and cedar nuances with just a hint of dark cherry fruit. Just kidding, it tastes like death and coffee, and the latter only because I chased it with a latte.

Here’s to hoping this witch’s brew works because this routine is getting old.