The Summer of 2017.

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

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

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

I have cancer.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Physically.

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

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

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

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

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

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

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

 

PACE round 2 wrap-up and other precious moments.

Drip.  Drip.  Drip.

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

“5,400,001. 5,400–“

Nurse: “Can I get you anything?”

“5,400,0–, err, 5,4 … GOD DAMNIT.”

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

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

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

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

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

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

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

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

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

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

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

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

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

Saved by the … 1970’s?

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

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

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

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

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

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

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

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

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

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

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

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

So DT-PACE:

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

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

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

How’d we get here seemingly out of nowhere?

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

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

“Knock knock.”

“Who’s there?”

“Interrupting Pirate.”

“Interrupt –“

“YARRRRRRRRRRR!”

Cracks me up every time.  Sorry, your list:

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

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

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

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

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

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

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

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

Tron dork, what can I say.

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.

Post-Thanksgiving update.

I guess I can’t really avoid this place anymore — certainly tried over the last month, but it gets kind of silly to not blog at least once a month for something like this.  As I was trying to explain to my wife, and think I did at some point to my therapist, is that I can generally cope with having myeloma if I can focus on the short-term, the present.  It’s when I start thinking about the future that things start racing downhill, and it’s hard to avoid that when I write.

I ended up lowering my dosage of Revlimid in September to 15mg from 25mg.  I find out in a few weeks how that has gone — the first cycle I did of that treatment the numbers dropped, but not substantially.  I’m hoping the numbers from the next blood test are better, since I feel like I’ve paid in blood for them.  Felt like hell for almost a week with some neuropathy and a ridiculous amount of fatigue.  I go back to Arizona on the 16th so I’ll get their opinion as well.

I’m probably switching local oncologists here — getting tired of the minor and major annoyances and outright fuckups I’ve had to deal with lately, culminating in spending 2 hours in one of their offices for a simple CBC test because some orders were put in wrong.  With the Mayo Clinic directing my care anyhow I’m less concerned about having the best local person I can find than finding one who can make my life easier, not harder.  Cancer’s stressful enough without your oncologist making it worse instead of better.

It’s a strange thing that I think most people with diseases like this must deal with — whenever something goes wrong it’s hard not to think “Jesus, I already have cancer, what now?” or something similar.  A lot of times that’s just the pity party talking, but in some cases, like, well I dunno, DEALING WITH A GODDAMN CANCER CENTER, you’d hope people would step a bit beyond the “this is just my day job” attitude and get the work done properly.  It’s not just about giving people drugs.

And I’m checking out some supposedly amazing alternatives.  We’ll see what happens.

Mentally and emotionally the last month has been a roller-coaster, from the trip to Arizona through the vacation I took with my wife and daughter.  It was hard being in Scottsdale again, alone.  It felt like driving through a memory as I went through the neighborhoods I stayed in for months during the transplant.  And not a very good memory, at that.

At the start of November I took a vacation with my family, a Disney Cruise.  When your white blood cell count is low that seems like the worst idea you can have, and I’m not sure it wasn’t, but the cold truth is that not knowing if you’ll be alive next month or next year tends to affect your travel planning.  If I go downhill tomorrow, in other words, at least I got to do this trip with my daughter.

Who won’t remember it, and was somewhat bratty all week, but whatever.  I tried.

Pondering ending my therapy (mental) this week when I go in — I’m not sure I’m getting enough out of it at this point to justify the cost, the time, or what it’s taking out of me emotionally to dig stuff up, and we’re not really so much doing therapy in the sense I’d understand it as I am just unloading so I avoid doing it to my wife.  In the end I have a terminal and somewhat unpredictable terminal disease, and that’s pretty fucked up.  I have narcissistic people in my life I can’t really avoid dealing with, and that’s pretty fucked up too.  I have a daughter that I adore but I worry, daily, I am going to mentally destroy at some point due to my untimely death from this goddamn cancer.

And that’s the most fucked up part of all.

Back in Scottsdale.

Sitting in a hotel room less than a mile from the Mayo Clinic, having already done my blood work appointment and trying to fill up the time until I see my doctor tomorrow.  Then home again.

It’s been a long, hard month.  One of the big things I have to discuss with the doctor here is changing my chemotherapy regimen somehow — both I and the Denver oncologist believe it’s too damaging to my immune system.  I’ve gotten sick every month at the end of the cycle since I started the Revlimid, culminating with 5 days in the hospital this month when I came down with bacterial pneumonia.  Either the dosage needs to change or I need a new drug, I guess.

Feeling really fatalistic lately.  On one hand perhaps that’s silly, seeing as how outside of fatigue I still am not sure I’m feeling the effects of the cancer so much as the drugs I’m being treated with.  Still, being in the hospital for a week, getting sick every month … it adds up, mentally and emotionally.  Having my daughter visit when I was in the hospital was really touch — the look on her face, the fear, until I won her over by showing her how I could make the bed move.

I sat today next to a pretty young girl at the Clinic who was with her father.  I watched as she helped him plug in his chair, talked to the nurse — 16, maybe?  I wanted to talk to her, to ask her what it was like to have a father wheelchair bound, sick, but even were it appropriate to ask I couldn’t.  This is the raw vein open, the thing that I keep coming back to.  We talked about it in therapy last week, how I really don’t fear death on a personal level.  I have nothing personally left on my bucket list that means enough to bemoan fate about.  But not being there for my daughter?  The thought instantly shrivels my soul, hurts in a way I can’t express and can’t linger on for more than seconds without dying a little inside.

I was listening to a podcast recently on World War I, and the podcaster (Dan Carlin) was talking about a letter a young British soldier wrote to his wife the night before the Battle of Somme, which the soldier did not survive.  Carlin noted that even were it in the end not neccesary, just the penning of such a letter would scar your soul.  Having written so many of them in the past year to my daughter, I can assure you it does.

Being hospitalized for pneumonia as a cancer patient really had me thinking hard about death lately, compounded by a recent death of a high school acquaintance that left behind a widow and two young children.  A lot about death.  In fact I decided that I wanted that soldier’s letter read at my funeral, whenever that may be, as I don’t think I could really put into words any more effectively exactly how this has all felt, what I live with every waking moment of every day.  I’ll close with that, I think, and update this again when I have something new to discuss.

I do not want to die.  Not that I mind for myself.  If it be that I am to go, I am ready.   But the thought that May never see you or our darling baby again turns my bowels to water.  I cannot think of it with even the semblance of equanimity.  My one consolation is the happiness that has been ours.  Also my conscience is clear that I have always tried to make life a joy for you.  I know at least that if I go you will not want.  This is something.  But it is the thought that we may be cut off from one another which is so terrible and that our babe may grow up without my knowing her and without her knowing me.  It is difficult to face.  And I know your life wthout me would be a dull blank.  You must never let it become wholly so.  For to you will be left the greatest charge in all the world; the upbringing of our baby.  God bless that child, she is the hope of life to me.  
My darling au revoir.  It may well be that you will only have to read these lines as ones of passing interest.  On the other hand, they may well be my last message to you.  If they are, know thought all your life that I loved you and baby with all my heart and soul, that you two sweet things were just all the world to me.  I pray God I may do my duty, for I know, whatever that may entail, you would not have it otherwise.

 

– Captain Charles May, 22 Manchester Regiment
The captain, a former journalist and poet, died the next day.