The holidays were such an unmitigated shit-show thanks to family drama that it really hasn’t been until the last week or so that I’ve felt centered enough to where I felt comfortable opening this Pandora’s Box. That may sound like a weak excuse since everyone seemingly has family drama around the holidays, but if it helps your perspective I actually had to consult an attorney over the shenanigans this year.


So yeah, most of the little energy I have just went into surviving December. And scarred and battle-worn I’ve fallen off the cliff into 2018. Here’s to hoping it’s not the health nightmare 2017 was or I don’t see me making it out of this one — I had to do some paperwork recently for our disability insurance policy (which is apparently garbage), and here’s my list of hospitalizations during the past year:

Admission Discharge Procedure
1/18/2017 1/23/2017 Colon Resection
4/19/2017 4/23/2017 Chemotherapy: VDT-PACE
5/22/2017 5/23/2017 Multiple Myeloma Complications
6/19/2017 6/23/2017 Chemotherapy: VDT-PACE
7/19/2017 7/23/2017 Chemotherapy: VDT-PACE
8/13/2017 8/20/2017  Chemotherapy: VDT-PACE
9/5/2017 9/9/2017 Multiple Myeloma Complications
9/18/2017 9/29/2017 Pneumonia Treatment
10/2/2017 10/5/2017 Kyphoplasty
10/10/2017 10/15/2017 Multiple Myeloma Complications
10/17/2017 10/27/2017 Drain of Pericardial Cavity

Fun summer, that.

Anyways a few disconnected ramblings to pour out this time, so be forewarned.

I believe the last time I sat down here we were in a holding pattern to find out what Dr. Matous wants to do with me. The answer is CAR-T, but the question becomes which protocol and when. There are a few things complicating this issue, none of which I have an easy answer for:

  • The big news out of ASH was the anti-BCMA CAR-T treatments, specifically Bluebird Bio’s. Unfortunately CBCI does not have that available and won’t in the foreseeable future. They will have a two-target anti-BCMA trial opening up around the second quarter of 2018, but there’s (a) no guarantee I’d get in and (b) it’s a dosage trial, which is more experimental than I’m comfortable with.
  • Right now I’m not on any chemotherapy and we’re hoping my numbers stay stable while we figure out what to do next. Unfortunately that’s not the M.O. for my cancer so every two weeks I go in for bloodwork, and while relatively stable my numbers are creeping up. Talk about “scanxiety” … I’m not even sure what we do if they start really moving.  Need to remember to ask that tomorrow, actually.

Tomorrow … tomorrow I’ll find out more then as I go in for the monthly IViG infusion and talk to the doctor. This is pretty nerve-wracking at this point as I’m honestly not sure what to do. I’m going to set up an appointment at the Mayo Clinic with Dr. Mikhael to get some more input as well, whom I haven’t seen in over a year — perhaps he’s got some ideas.  I feel like I am definitely experiencing side effects of the cancer, however — my fatigue level is abnormally high and getting worse, and there’s something seriously wrong with my internal thermostat. Should have some preliminary answers about my temperature problems tomorrow as well.

In other health news I had an MRI last Friday for my back — I’m still having a ton of back pain and it seems to be coming from much lower down my spine this time. I should get an idea of what’s going on when we go over the results tomorrow but I have a hard time buying that there’s not something seriously wrong given the pain level. Early last week I took all of my pills out one morning, went to the kitchen to get more coffee to down them and then apparently had a chemobrain moment and just left them un-swallowed on my desk.  By lunchtime without the daily 40mg of Oxycontin on board I thought I was going to fucking die from the pain.

What else … oh! Unusual for me but I’m going to start doing reiki, or at least trying it, next week. One of the things I learned at that Myeloma support group I went to last month was that there’s a group here in Colorado that donates 12 weekly reiki treatments for free to cancer patients, so I figured I’d try it. Can’t hurt, right?

Lastly, I participated in a brain tumor Twitter chat last night which ended up being a double-edged sword. Normally I’d skip something like this but the topic was on advanced care planning and when your sub-group of cancer has as small an online footprint as Myeloma does, you take what you can get for support. Interesting chat although it stirred memories and a few things on my mental to-do list I didn’t want to think about last night, enhanced I’m sure by enjoying a bowl right before the chat started.

It does remind me, however, that I need to put together my “Hey I just died, here’s what you need to immediately do” note for the lockbox. I’ve been avoiding that one and doing so knowingly but it needs to be done. A few passwords and instructions and then I can cross it off. I’ve just been so depressed for so long due to the holiday season and how bad it got I just couldn’t, you know? But it’s time and I simply don’t have the luxury, certainly not after how bad my health got last year, of procrastinating — that’s not fair to Amy or Ari.  Sigh.

That’s about it for now. I’ll post at least a quick update tomorrowish once I find out more about the back and the rest of the doctor’s appointment. Happy New Year to you folks and hope 2018 finds you in better health than last year.

Group sessions and ASH.

I’ve had one of the worst weeks of my life, emotionally, so if this is discombobulated it’s because I am. Going to avoid getting into why, however, as it’s so ugly, anxiety-inducing and just plain wrong it’s a no-fly zone for now. Been fighting off a serious depression for a week straight and it’s taking everything I have just to maintain.

I did want to get a few things down on “paper” however, as it were — this is the Magellan aspect of writing for me, this hope that in just typing I can find connections, put my life in order, discover what the REAL problem is, exorcise something, whatever.

So one thing that’s somewhat interesting is my only real-life (as opposed to online) friend who has Myeloma, Mary, convinced me to go to a monthly support group in Denver with her this past Saturday.  Specifically we went to the Denver Multiple Myeloma Support Group, which meets downtown on the second Saturday morning of each month. It was interesting, and surprisingly (at least to me) I think I’ll try to make it regularly.  Oddly enough I tend to get a bit introverted speaking about myself in person so I don’t generally do group-speak activities but I figured fuck it, I’ll get to hang with a friend I don’t get to see enough and be supportive, plus why not?

So the agenda changes depending on whether they have speakers or not but this time the meeting started with a nice meditation and then we just went around the room sharing our stories. Obviously for privacy reasons I’ll avoid relating individual’s information but interestingly for there being only eight folks this particular morning there was a wide variety of Myeloma experiences, from a 19-year survivor to someone who just got diagnosed and hadn’t even started treatment yet.

One person’s experience was actually similar to mine in that they found out via a blood test that looked bizarre to a doctor instead of some catastrophic Myeloma-related incident.  And I mention this only because the person noted while relating their story the experience of that moment where you’re hoping it’s MGUS (“monoclonal gammopathy of undetermined significance.”).  Which for the uninitiated requires a bit of explanation — so MGUS is like a precursor to Myeloma with something like a 30% chance of blossoming into the wonderful gift we know and love (no idea where I remember that stat from, so apologies if it’s incorrect).

Point is it’s what you want your blood test to say when a doctor sends you to a hematologist to explain the weird blood test results. It’s a significant moment because here you are in the hematologist/oncologist office with what feels like your last chance that this is all some crazy mistake, that the nightmare of sitting in a cancer doc’s office isn’t really happening, primed and ready for the biggest sigh of relief you’ll ever have in your life … and then WHAM. Nope, sorry, fuck-o, you lose!

It feels like I’ve walked this road for so long that combined with the chemobrain I look back sometimes and wonder at it all, especially when I recall moments like that.  More, I wish I had some pithy useful conclusion so far besides “What a long and bizarrely tragic shit show,” heh.

Onward and upward, this weekend is the American Society of Hematology’s big annual meeting.  I’ve been following it on Twitter as best I can and re-Tweeting links to articles normal human beings can understand (i.e., minimal obscure acronyms and jargon), so check the Twitter feed if you want some highlights focused just on Myeloma.  All the big hitters in the industry seem to be there, including both Drs. Mikhael and Matous, my favorites, so it’s been interesting for sure. I’m not sure what the big takeaways are from the weekend yet in terms of new stuff for Myeloma, but my list to discuss with Dr. Matous this coming week includes:

  • what’s going on in CAR-T for Myeloma
  • what is my sub-type?
  • what’s all this about doubling up on the flu vaccinations
  • what’s the story with Venetoclax for Myeloma, and
  • what are the latest thoughts on transplants. Seems like I’m seeing more and more about allogeneic (other peoples) stem cells for relapsed Myeloma victims like me as opposed to a second autologous (your own).

No cure yet though. Also if you want a wrap-up Dr. Mikhael is one of the three experts who is going to present a free streamed discussion on the latest trends in treating Myeloma on Monday night which you can watch here.

That’s pretty much all I feel like unburdening myself with right now. I have a big meeting with the Doc on the 13th where we’ll be discussing what we do next, so I’ll post again this week when I’ve had time to process.  Toodles.



Well, I made it.  Forty-seven years old.

As opposed to other birthdays it almost feels like an accomplishment this time, like I “won” or something.  Crossed some invisible finish line in life, even though the race never ends.  Although sometimes just getting through a day you feel like that when you have that cancer monkey on your back, don’t you?  My time horizon has shifted so drastically that I can’t think about next week, or month, or God forbid year.  I just need to get through today and I’m never sure what hurdles I’ll have to surmount.

Up until yesterday I’ve been doing really well — great mood, energy, etc.  Since I got out of the hospital about a month ago I’ve been going to bed at reasonable times (a good 2-3 hours earlier than most of my life) which I’m sure has contributed to that and getting up without being grouchy when Ariana bursts into our bedroom at 6-6:30 am. It used to take me 30 minutes of groaning, phone-surfing and sheer willpower to get out of bed; now I just get up. In fact a few times I’ve let Amy stay in bed and taken the puppy out, fixed Ari some breakfast, made some coffee for myself (trying to wean off the Starbucks a bit) and been wide awake.

Like a real husband / dad. It’s been nice, I won’t lie. Since my diagnosis all those years ago I’ve felt like I’m phoning it in sometimes and I hate that. Especially when it comes to being a good dad. I know it’s silly to rail against the reality of this disease at times, such as the fatigue, the back pain, etc., but it still bothers me. You want to be the best parent ever, not whatever the fuck this is.  So it’s been nice.

I’m different since I left the hospital. More thoughtful, nicer, calmer. Did a lot of thinking staring at those ceiling tiles and so far so good.  My marriage is better, although if I don’t stop snoring that may be in jeopardy soon. I do more with Ariana, and less with my cell phone and computer. I’m sleeping better, although only with the help of a bunch of scary pharmaceuticals. Just hoping it continues as I like this version of me, especially contrasted to the me when I was taking Dexamethasone and destroying my life without even realizing it. *shudder*

Not sure if I’m coming down with something or not in the last few days but my energy is definitely lower which is weighing on me a lil’ bit — took a nap yesterday afternoon after leaving work early and although I didn’t get to sleep until around 9, I went to bed at like 7:30 pm.  Amy and her mom (nurse-to-be and nurse) believe I’ve still got a lot of healing to do and I’m inclined to agree.  Just hoping I don’t get sick … it’s never “just a cold” with me, at least this year, and I really could do without any more hospital stays or the accompanying bills.  So far though just a tiny runny nose and fatigue, so fingers crossed.

One concern right now is my taking Oxycontin daily. My back has been really bad so I’ve been popping one with the morning meds and it definitely works. Having been a hypochondriac for most of my life, however, I’m freaked out about whether I’m working on an opioid addiction. I know it’s ridiculous for a variety of reasons to think I’m addicted to it but I’m so wary of stuff like that — it’s one of the reasons I never did cocaine in my life (just every other drug, heh) and why I don’t drink. I need to figure out something though because I really am getting sick of the back pain. Another thing to discuss with the docs this month.

My internal thermostat is all fucked up as well. Ever since I left the hospital I’m either sweating or freezing. At the appointment with the oncology team that I’ll get into in a second it was suggested that perhaps I’m having thyroid issues — apparently what I was describing is a sign of thyroid issues. We didn’t schedule a test though so I need to remember to ask about that at my next visit.

Since I last wrote I met with Megan, the nurse practitioner from my oncologists’ team, and had a follow-up with Dr. Barley, the cardiologist that took care of me in the hospital. The heart looks good (according to the EKG) and Dr. Barley seemed pleased that I looked so healthy compared to the last she saw of me. We discussed if it was OK for me to take Carfilzomib (a chemotherapy that can affect the heart) and what drugs I could get off (the daily aspirin only, sigh) and worked out a tapering-off schedule for the steroid I’m taking.

Megan and I had a long meeting, which was awesome. Perhaps you’ve learned this yourself but there are some folks in healthcare who really do care about you and it shows, and she’s one. I also hate feeling rushed and none of the docs or their teams at CBCI have ever made me feel like that. Net-net is no chemo right now while my body heals up from all of the damage this year while Dr. Matous takes some serious time to review my case and figure out where to go next.  CAR-T clinical trial?  Stem cell transplant?  Carfilzomib?  Something else?  Either way I meet with the doctor on the 13th and I’m sure we’ll map something out to start after the holidays.

My hair has come back, although mostly white this time, and I’ve put about 10 pounds back on since I left the hospital.  People keep remarking on how much better I look, that I have color, etc. Considering I looked, and felt, like a corpse when I left the hospital a month ago, I appreciate the comments. It all seems so bizarre though, and I still feel a bit displaced.  Having eyebrows, a beard (albeit a white one) and some hair again certainly has helped though.

Although personally I attribute the hair growth to the puppy, who seems to take an inordinate amount of pleasure in licking my head.



The double-k in the word “bookkeeping” always looks wrong to me.  A-D-D kicking in, must. Not. Gah! Weird looking word.

Anyhow I got off my butt today and filled in some data in my Myeloma Spreadsheet. This is the kind of nerdy stuff people like me do when they get cancer apparently (I’ve been told that).  Except I’ve put it online!  Now you, home viewer, can track along with my shitty cancer numbers from your very own Internet-enabled device!  Yay!

Someday I’ll make a lot of pretty graphs to go with it. Or die horribly from cancer, either way.

I cobbled all of the numbers I had stashed in the various boxes of medical paperwork and from current and past docs so there are some gaps and missing data, but you can kind of get an idea of the trends.  I also included the dates I tried different chemo regimens so you can see their impact (usually not very impressive).

If you are interested in what those numbers represent, I shamelessly stole the following definitions from this website:

Monoclonal spike (M spike): An important measurement used for diagnosing multiple myeloma and for monitoring how well treatment is working. When you have MM, the malignant myeloma cells duplicate many times and produce an excess of an abnormal immunoglobulin called monoclonal protein (or M protein). So when the Serum Protein Electrophoresis (SPEP) test shows a spike in M protein, this is a sign of MM.

Immunoglobulins (IgA, IgM, IgG, IgD, IgE): Antibodies that play an important role in fighting infections. There are 5 different types of immunoglobulins in your blood, which scientists have named IgA, IgM, IgG, IgD, and IgE. Each of these has a slightly different role to play in your immune system.

When you have MM, the malignant (or cancerous) myeloma cells may produce large amounts of one type of immunoglobulin. Your doctor may test your blood for the levels of immunoglobulins to help determine which specific type of myeloma you have. IgG and IgA myelomas are the most common.

Free light chains (kappa, lambda, kappa/lambda ratio): Small protein chains produced by plasma cells, a type of white blood cell that makes large amounts of a specific antibody that fights bacteria and viruses. Light chains combine with other, longer protein chains, known as heavy chains, to form immunoglobulins (antibodies that play an important role in fighting infections). Scientists don’t know why, but plasma cells produce more light chains than are needed to create immunoglobulins, and these extra light chains end up in your blood on their own as “free” light chains.

There are 2 types of light chains, known as kappa and lambda—and each plasma cell produces only 1 type. The amount of free light chains in your blood, and the ratio of the 2 types, can help to show the activity of myeloma cell growth and can be used to help diagnose MM.


I Was Ariana’s Daddy.

Had a great night but maudlin now that I’m home — I guess that’s the cancer life, in a way.  It’s hard for us to have fun without immediately contrasting it with the pain of this existence at times. The pinnacles just drive home how fucking deep the depths go.

When I first got diagnosed I had a grand plan to write a book for my daughter, to make a mark somehow just for her.  Life, or this slow progression towards death with all the  chemo and hospital stops in between, just got in the way.  Perhaps this serves the same purpose, compiled someday … there are instructions to that effect so she at least has some record of how much I thought about her.

Anyhow I was going through some files on the PC tonight and found the intro I wrote for that book a few years ago. It follows, the title of this entry my working title.  Maybe I just feel like I need something personal to her here right now; I feel precarious for some reason, fragile.  My KitKat stash has also run out which is not helping.

What is this book?

That’s a good question, actually.  I suppose the best title would be a self-epitaph, if there is such a thing.  A how-to manual for being average?  A road map to the middle?  Wishful thinking?  A giant conceit by an otherwise un-noteworthy person?

That’s the problem, isn’t it.  If I were some famous actor I’d be here pontificating on how wonderful I am or whatever people like that write about.  If I was one of those annoying cancer survivors who has to blather on about how cancer was almost a good thing in their life for the changes it fomented, that’d make sense for a book (although it’d still be annoying – seriously, fuck those people and their cheery bullshit).  If I had some ironic experience, like the neurologist who discovers they have brain cancer, I could perhaps explain something.

But the question I kept asking myself most of my life, and the reason for things like why I never wrote a book even though I always wanted to (fiction), was “who the fuck am I to write anything?”

The answer, as I’ve learned, is “nobody.”  Well almost nobody – because there’s a context that becomes important here, one regarding the audience.  You might think it’s you – I mean that’s just semantics, right?  You’re reading it, so it is you.  And to you, random person, I’m nobody.  I don’t think there’s a life lesson here, or a how-to – just a prurient sort of entertainment at best.  But I didn’t write it for you.

See I wrote this only for my daughter.  In fact, this started as a series of letters I began writing her when I was diagnosed with Multiple Myeloma (I think it’s supposed to be capitalized – feels like if something murders you it deserves caps, right?), but I found that not only was that a really odd format but even worse I’d write her a letter, seal it and put it in a safe deposit box, and then promptly forget what I had written.  So I pondered maybe just putting them all together or something because as the disease, and moreso the treatment, stole my memory (“chemobrain” as they call it) I started wondering if my daughter would end up reading these and think her dead father was some idiot with Alzheimer’s.

Not really the impact I was going for.

Additionally, I was not religious about writing those letters – similar to therapy, which I ended after the first few years of my disease, when I write my soul opens and it all comes out.  Unfortunately, those letters became tantamount to opening Pandora’s Box, and since I had to be functional as both a father and sole provider I just couldn’t do it.  I realized pretty early on that, in and of itself, I didn’t care that I had a terminal disease.  Really, what else was I going to do in life?  Play in the NHL?  I’m 45 and don’t skate.  But I had a daughter, and that not only changed everything but it was my one Achilles’ heel with this – I cannot, to this day, think about leaving my daughter behind at a young age without it just wrecking me emotionally.

See this is the life I’m afraid I’m never going to be able to relate.  It’s the conversations I would have given anything to have with her but this disease stole from us.  It’s the little things I would have hoped she would have learned about me, come to understand, and maybe even loved a little.  The jokes we might have shared, the music I would have tried to get her to become a fan of, the games we never got to play.  It’s as much of me as I can figure out.

Maybe you (that’s the “not my daughter” you) get something from it too.  I have my doubts, honestly – not to play the humility card too much but one of the things I’ve learned about myself is not only am I nothing really special, per se, I think I made some critical errors somewhere in my life and went down too many wrong paths.  I think I might have been able to be someone special, at least in the way we all think of things.  A CEO, I think, or the right-hand man of one – the more I’ve learned about myself over the years the more I think I would have excelled elsewhere had I chosen differently.   But I’m not entirely sure, given the choices I’ve made, that I would have done so, so perhaps I’m just fooling myself?  Either way I can’t really point to specific events or decisions and say “see, avoid this and you’ll be richer than Oprah!” or something really useful in a book.

Not only don’t I have any answers, but if you’re reading this I’m also dead, so it may be the worst self-help book ever, come to think of it.

Worst.  Ever.

But there’s one person out there I need to read this.  I’d say I hope it’s enough but it’d be pretty fucking stupid to wonder if a poorly written and badly flowing book is a substitute for a dad being there.  I’m not even sure what the point of writing this is – I keep coming back to wondering whether somehow this is an ego trip or something, some last-ditched attempt to be something for my now fatherless daughter to be able to point at and say things like “my dad, the writer.”

You know what, though?  I don’t care either.  You decide.  For me, all I can say is it’s a love letter to a relationship cancer stole from me, and that’s about as honest as I can be about it.  It’s some small attempt to steal back what this disease has taken from two people, and I know it’ll never be enough.  It’s a longer, and more thought-out, goodbye than I’m sure I got to say to her.

And it’s all I have.

I love you, Ari.

-Daddy, 2/2016


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.


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.


An Unhappy Labor Day.

Just a quick Labor Day update.

I was released from the hospital after pneumonia and the back surgery in late August.  My back never stopped hurting — recently however my oncologist upgraded my drugs to OxyContin which, while not taking away all of the pain, made a significant difference.  I still cannot bend over to pick anything up and I feel like the pain hasn’t really changed a lot.

Tuesday I begin PACE round 4. I’m not entirely sure, especially with my back, that I’m ready for this but at least it’s the last one.  Unfortunately a good amount of my support here has vanished making this even more of a precarious situation — my caregiver is effectively hostile at this point and I don’t have a lot of places I feel comfortable turning.  I guess that means a lot of Uber in my future.

One of the things about cancer that I will never stop wondering at is how when you think you’ve seen how bad things can be it shows you something far more worse.  Between my back, my disease and what it’s brought out in those around me I’ve been in the darkest place I ever recall being in lately. I haven’t felt like writing or socializing. Constant pain, both physical and emotional, conspire to make each day a new exercise in discomfort within my own skin.

Each day I ask myself why I’m putting myself thought this, and each day the answer is harder to find.