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.

 

The bad sevens.

Not even sure where to begin this.

I guess just the facts to start.  Tuesday night I started feeling a bit run down with a tiny productive cough and some minor nasal congestion.  Given all the craziness of the last two weeks (IViG, blood transfusions, bone marrow biopsy, the usual weekly chemo, the Neulasta shot, etc.), I was inclined to think it was just the aftershocks of all of that.  Wednesday I woke up and felt like Hell … low energy, body aches, the nasal/chest congestion.  Went to work but came home at lunch on my last personal drop of energy and slept until about 10 pm.  By then I had developed the sweats, chills and a 102.3 temperature.

Waiting until morning we contacted CBCI and they gave me an appointment, but after waiting an extra 30 minutes in their office past my appointment time we realized they were so slammed that I might as well just go to the ER downstairs.  The ER did the usual stuff (chest x-rays, cultures, blood tests) and decided I had pneumonia again, so the wife and kiddo went home to get Ari to pre-school while I waited for the inevitable admission to the hospital.  They brought me up to the oncology ward and I’ve been here ever since, fighting what they now tell me is the flu.  Let’s see … sweats, chills, full body pain, cough, nasal congestion, zero energy (due to damn near zero hemoglobin again), nausea and the kitchen sink.  Thankfully the wonderful nurses here have been a big help even slammed (I got the last bed in this ward, which for whatever reason I always feel guilty about), and the Dilaudid and now Oxycodone (Dilaudid works great but gives me a headache at the end of every dose) have gotten rid of the pain.

They’ve done nothing for my mental state.

Even though I was forced to skip chemo this week my counts are still really low, so I’ve had 3 transfusions in as many days.  More disconcerting, however, is I met with my oncologist today at the hospital to discuss my treatment and bone marrow biopsy results from Monday.  Since the beginning of March and this Daratumumab / Revlimid / steroid therapy my M-spike has gone from 4.4 to 3.5 in just over a month.  That’s great, right?  Problem is my kappa is going the opposite direction and I get the feeling that the doctors are a bit confused by that (apparently they usually march in the same direction).  Not sure where my IgG is but I’ll try to find it.  Anyways here’s the scary part — my plasma is 90%, according to the bone marrow biopsy.  As I understand it what that means is in the sample they took from my pelvis on Monday placed on a slide, 90% of the white blood cells are monoclonal (bad) plasma cells.

My oncologist didn’t say it, but I’ve done enough reading to know that that’s probably why my counts are so bad — the good blood cells are being crowded out by the bad ones.  He wants a few more data points so we’re going to continue this for a few more weeks but chances are he is going to change strategies soon.

I’ll be honest, I’m kind of heartbroken by all of this.  I’m just so tired of it all.  I’ve been slogging through this fucking mess for what, 4 years now?  And there hasn’t been a break.  Chemo after chemo after stem cell transplant after chemo after chemo ad nauseum.  Barely a partial remission, and when I took a two month chemo holiday this year for my surgery my numbers almost doubled.  I feel like this burden just gets heavier, and heavier, and heavier.

So here we are, realistically at what could be near the end of the journey I’m guessing?  I have 90% bad cells and my counts are low, so where do I go from there?  Now I have no idea.  And you know what?  If this is it, I’ll be honest — part of me doesn’t even care.  I read about these folks who have done 20 years with Myeloma and I don’t know that I have that strength even if I’m given the time.  I just need 13 more years to get Ariana out of high school and I feel like that’s being taken away now as well.

I can’t even mentally go there right now, I’ll be out the goddamn window.

Just once, I would have liked to had a blood test that showed whatever we were doing was working amazingly well.  But man, not one in four years now.  I can’t describe how brutal that is, week in and week out, to try to summon just a tiny drop of hope and watch it get squashed every time.  I’m tired of doctors and nurses and hospitals — I like the folks but seriously.  I can barely even work now I’m down here so much.  Sick of being afraid to kiss my daughter, and having to wash my hands like I have OCD.  The dumb thing is the IViG at least has been working — I haven’t really been sick since I started it except for this stupid flu (which I’m not sure IViG could deal with anyways).

I’d like to think I took a lot of this in stride.  I had to give up diving and my path to become a diving instructor, a real passion of mine, and even though I knew it was fucking dumb I kept up hopes that someday I could safely do that stuff again with my immune system.  I go to most of my appointments alone because even though I appreciate the support I don’t want to put this cloud over other people.  Plus I’ve found having folks there at times can make the emotional wall crack, especially if it’s my daughter.  I didn’t really even want much from life anymore — time with the people I care about, their health, and some quiet time to ponder things.

I give up, this entry is going nowhere.  Sorry.  I guess this is where I’m supposed to get religious as a cancer victim now, right?  Yeah.  Problem is the only God in my world is Random Number Jesus and he just keeps rolling the bad 7’s for me, one after the other.

Oh.  Have a positive attitude Rich!  Keep your chin up!

Yeah I’ll get right on that.

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.

I, for one, welcome our new cyborg overlords.

Getting a port put in today. I fought this for what, 3 years? Sick of getting poked and nurses not being able to find my veins easily anymore, but I had fought this until recently. I think something changed when I was in the hospital last month with pneumonia. I just feel defeated a bit, broken down. Tired of mentally fighting to pretend things could go back to normal, that this was all just a phase. Something about staring at those ceiling tiles, again and again, just broke down my resistance, until the thought of just not being stuck (or missed, as the case more often is) constantly got to be too much.

Oh well — on the bright side, I foresee a LOT of natural painkilling methods tonight followed by a sick UFC card on Saturday, so screw it, bring on the cyborg Rich.

A reality check.

Sorry, as usual, for not updating more.  The holidays were terrible and caused so much stress (family stuff) that it felt like all I could do just to survive, much less dwell on everything else.  I think I mentioned it in the last entry, perhaps not, but my mental health effectively waxes and wanes with whether I can keep the emotional walls up and not really think about the horror of this diagnosis.  When other things damage the wall, it all comes flooding back.Nothing much is new, other than a better yet sadder understanding of those around me.  I wrote a letter to a parent that I never sent to clarify my thoughts, and realized it would suffice as an entry here for now.  Life is OK, or as OK as it can get when you just step around the elephant in the living room and try not to acknowledge it’s existence. Anyways, a portion of that letter …

I have a rare and terminal form of cancer.  That isn’t grand-standing, “pulling the cancer card” or being melodramatic, it’s fact.  While treatable and thankfully caught early, unless something changes at some point we will not be able to keep these numbers down and this disease is going to start attacking my organs, assuming the damage it is doing on an ongoing basis to my immune system doesn’t do me in first.  As you may know, what generally kills you with cancer isn’t so much the disease itself but what it allows to be done to your system.  I got to experience that firsthand when I was in the hospital for four days with pneumonia recently (one of the primary killers of people with cancer).  In fact I think, of all of the time in the last few years of staring at hospital ceilings while trying to maintain my composure, that it really occurred to me that this is probably how it’s going to be at the end.

Every time I get a runny nose I have to think about that.  I can’t really go to children events safely, although I try to for my daughter’s sake and my own, mentally.  I feel like I sit on the sidelines too much as it is with her due to this nightmare.  I actually risked my life just to go on that Disney Cruise for God’s sake – probably the worst idea, from a health stand-point, I’ve had to make.  But I had to balance whether it was more important to take a risk and make at least some memories with my daughter versus not knowing if I’ll even be around a year from now.  I’m not sure if you know what that kind of a decision is like, but I hope you never have to make it.

As best as I can describe it, when I was diagnosed the world went from spinning on its axis at 600 mph to 0.  But just for me.  I watched as everyone else got to continue their lives like nothing was wrong.  Except mine had just ended.  I suppose that’s what it’s like in prison, too.  Staring out the window at a world that has stopped for just you while everyone else gets to go on living like nothing happened.  With most things, as I’ll touch on in a moment, I’ve just given up and accepted my new role.  Some stuff, mostly related to Ariana, I still refuse to even if I should.

The sad thing is, my decline towards the end could start in earnest tomorrow.  Or the next day.  Next week, next month … whenever.  No warning, just the starting signs of the end.  That’s the other fun thing about myeloma and cancers in general, and why the local oncologist wanted a deeper response than the Mayo Clinic.  As long as this is in my system I am in imminent danger.  

Granted, you and I don’t stress about a lot (pretty sure I inherited that from you) but that’s one that keeps me up at night.  Every night.  And it probably always will.  People talk about living with cancer a lot that have it and in the literature about it – what people who don’t have it rarely understand, however, is that it’s a mental and emotional battle, and honestly, most of us just give up.  I’ve already met people who are dead now from this and other forms of cancer.  Did you know that?  I’ve met folks who have given up and just refused to deal with chemotherapy anymore.  I keep going for my family, but I’m pretty sure if it wasn’t for Ariana I’d be in that boat.  What I’ve learned in part by doing so, however, is after a while you become so numb from dealing with the horror that you just don’t have it in you to do so anymore, and you get a bit colder, a bit more aloof, a bit quieter.  It doesn’t ever go away, trust me.

I vaguely remember you making a comment, I think to Amy one night when we were all together, about how when I was diagnosed was the only time you’ve ever seen my scared.  That fear has never gone away.  Not for a week, a day, a minute.  In some ways it’s hardened me, although it’s made me so aloof in doing so that I have issues communicating with anyone I’m close to anymore.  Imagine what that kind of fear is like, if you even can, that fear you saw a glimpse of.  Imagine living with it as a constant companion.  Look me in the eye sometime, I bet you see it.

Getting back to Ariana and this, I have had to enter into therapy and take fairly high-dose anti-depressants simply to get through the day mostly because of her and how the cancer is going to affect her, not me.  I have had to learn that if I focus any longer term than the current day I actually begin to emotionally break down – the thought of orphaning my daughter, which is one of the most traumatic things a child can experience, starts flooding into my head.  Every song on the radio seems to be about loss, every comment on a podcast I’m listening to applies, every thought that enters my head … it’s so upsetting to me that it actually physically shuts me down.  There are nights it hits me out of the blue when I have the strength and energy left to put her to bed and read to her.  She’s at the age where she’s started asking questions about why I am always going to doctors and why we were in Arizona, and I don’t even know what to tell her.  Sorry, honey, daddy’s dying?  She cries when she can’t find her blanket, how will her three-year-old mind work with that?

Most nights that I put her to bed I then go to my room and cry for a few minutes.  Even Amy doesn’t know that one, she just thinks it’s when I go to the bathroom.  Or she does and just respects me enough not to ask about it and risk upsetting me when I imagine she notices how glassy and red my eyes are.

You may or may not know this, but most children effectively wipe their minds of memories around age 5.  Did you know that the top goal in my life is to make it past that age, simply so she remembers who her father is?  Have any idea what it’s like waking up every day and that’s your entire purpose in life?  To make sure you live long enough that your daughter remembers you?  I talk to other parents and they are already worried about things like high school, the internet, the opposite sex, drugs and alcohol, accidents, driving.  They say this shit to me and I can’t even relate.  I just want to live long enough to spend more time with her.   That’s it, the rest of life can just go away.  It’s all I want.

If you want to know what that’s like for a few minutes, write her a letter from her dead father.  Try to figure out what you’d say so you can get that minuscule an amount of peace that your 3 year old will someday know what her father was kind of like.  I have a stack of those in a safe deposit box for her, did you know that?  The tickets from our trip to Tiny Town are in one, and the stubs from our day at Disney World.  Pictures, and lil’ trinkets and things.  Pages of letters with who my favorite bands and their songs were, stories from when I was a child, life lessons, but mostly just how much I loved her.  Because chances are there will be nobody to really tell her any of that, at least in the way I wanted to share it.

So like I said, someday I am going to wake up to find that the myeloma has begun my end.  Again, that’s just fact.  I live with that every single day.  It’s why I have to take Xanax most nights simply to sleep and stay asleep, because I’ve found if I don’t that when I wake regularly at 3 am to the thought of “I have cancer” because the drugs I take to battle it make me sweat like someone poured a bucket of water on me in my sleep, I have a prayer of getting back to bed and at least getting a little rest.

I also live with the fact that, from everything I read, the end via myeloma is extremely painful and unpleasant.  The funny thing is, of all the horror involved with this that’s the part that worries me the least.  I guess I just haven’t thought about it enough, but I’m sure at some point that will start grating on me too. 

Now about those treatments, I take chemotherapy drugs, as you know, 21 out of every 28 days, and several ancillary drugs to keep me relatively safe while doing so.  Even at the lower doses I now take, the steroid keeps me from sleeping well (and I think causes that sweating issue) and causes irritability issues that force me to restrain myself constantly when dealing with everyone from Ariana to random strangers.  The Revlimid is even worse.  I am tired from the minute I wake up until the minute I go to sleep.  I have found that unless I drink a good 32 ounces of coffee a day (which is why I now bring a French Press to work every day as you’ve seen, since that’s over $20 a day at Starbucks otherwise) I cannot make it until 5 pm.  As it is, even with the caffeine by the time I get home I am rarely able to do more than sit on the couch even though I only have an hour or so with Ariana a day before we have dinner and she goes to bed.  I try to come up with games for us to play where I can lay down, and a lot of nights I’m so tired that even though my favorite part of the day is getting her ready for bed and reading to her and telling her stories like I sort of remember you doing for me, I just don’t have the energy.

Every month I have a 30 minute phone call with both my pharmacist and Celgene themselves to get my next prescription.  I get to talk to a stranger about how yes, I know if I have unprotected sex I’ll give birth to a child with birth defects (Thalidomide babies, since Revlimid is a Thalidomide/Lenalidomide extracted drug).  Yes I know if my daughter manages to get a spec of Revlimid in her mouth it could kill her or permanently disable her.  Etc. etc.  It’s a fun phone call.  Oh, the chemo also causes a side effect (exacerbated, apparently, by the stem cell transplant) affectionately called chemo brain.  I used to be considered sharp, had a great vocabulary, etc.  Now I stay silent a lot more because words that used to come easily to me are just gone.  Memories are blanked, and I just stare emptily at people who bring up things we’ve done together that I for the life of me can’t even picture much less remember.  My internal calendar is totally warped to the point I have to put reminders in my phone just to remember basic stupid things.  It’s embarrassing at best and thoroughly depressing at worst.  I always thought my brain was about all I had going for me in life, and now that’s crumbling apart.

Once a month, I have to go all the way downtown to get an IV of Zometa (Zolendronic Acid, I believe) because one of the fun side effects of myeloma is the damage it does to bones.  The nurses regularly have to poke me multiple times and comment how beat up my veins are, and at some point (or perhaps when they change my chemotherapy to an infusion-based instead of oral regimen) I’ll have to have a port put in.  I think mom had one of those for a while with her heart troubles.  Imagine spending the rest of your life with a plastic hole in your chest, though, just to stay alive a few more days.  Anyways, the Zometa infusion is fine.  That is, until about 24 hours later when the pain and flu-like symptoms start, and then the next 48-72 hours are a nightmare.  I don’t think its’ pain on the level you’re dealing with with the sciatica (sp?), as nerve pain is about as bad as it gets.  But there’s no escaping it.  Your actual bones hurt, and for some reason so do most of your muscles, which tighten up so bad it’s difficult to walk or even stand up.

Did I forget the best part about that infusion?  Zometa apparently has a 5% chance of causing osteonecrosis of the jaw in people who take it.  You and I both have a pretty solid background in statistics – how many treatments do I need to take before I’m at such a high risk it’s almost a certainty?  Do the math.  Don’t share it with me, I already know.  Imagine that dental appointment though, when your dentist tells you that your jaw has begun irreversibly rotting and they’ll have to start a lifetime of cutting away chunks of it.  And people wonder why horror films don’t really bother me anymore.

One more fun and recent addition is they noticed when I was in the hospital for pneumonia late last year that I don’t get enough oxygen at night anymore.  After completing a sleep study with Parker Adventist Hospital and going over the results with a doctor, I am now going to have to start sleeping with a CPAP device.  That’s a machine with a facemask on it to keep me from dying in my sleep, apparently.  The hits just keep coming, as they say.

I won’t even get into the less polite side-effects like the constant stomach problems, etc.  But believe me the list continues.  There is one last fun one, which is not only is my system effectively incapable of losing weight, I gain it at the drop of a hat due to the steroid and the anti-depressant.  I was in the best shape of my life when I was first diagnosed, if you recall.  Now I have to hang my head and shop in the XXL racks and deal with the embarrassment of family pictures and tight clothes.

So what’s my life like now?  Most weekends I spend sleeping late and napping.  That’s the only quality time I’m able to get with my daughter but I rarely have the strength and energy to do that.  I spend most of that time, when I’m awake, trying to pretend to be normal and thankful she doesn’t notice yet, and trying to cope with the fact that at some point she won’t want to (or be able to, because I’m gone) spend time with me anymore and I’ll have permanently lost that due to this disease as well.  In other words even the time I have now I can’t spend the way I want.  I can’t take her the aquarium because I can’t be in shoulder-to-shoulder crowds of people due to my immune system, nor do I have the energy to deal with it anymore most days.  We eat at slightly odd hours to avoid crowds in restaurants.  Hell I’m afraid to kiss my daughter half the time because like most kids her age she always has some sort of respiratory thing going on.  I have to wash my hands like someone who has OCD and carry a bottle of hand-sanitizer everywhere I go.  I don’t even drive my family around most of the time – I’m so tired I’m afraid I’ll get us in an accident.

I say this so you understand that the word “fatigue” rarely sends the message of what it actually is like to live it.  Fatigue always sounds a little tiring, not like something that is actively ruining any enjoyment you have in life.

My own personal life?  I don’t have one anymore.  One of the weird things about cancer that a lot of people with it notice is that when you are diagnosed, you stop being who you were.  I am no longer who I was two years ago … I’m now a cancer patient, and that’s all I’ll ever be.  Maybe that’s like being an alcoholic or drug abuser?  All I know is I don’t see the world the same anymore.  Honestly, if it wasn’t for Ariana I wouldn’t even be here now – most of the reason I started therapy was that I was suicidal when I found out about all of this and things began progressing.  I don’t want to be this, period.  It’s not fun, I don’t enjoy life anymore at all outside of my daughter, I have trouble dealing with the anxiety (to put it mildly), I have trouble with the lack of support I feel from most of those around me, and what little quality time I can muster with my daughter is always tainted with the fact that at some point this is going to destroy her just as much as if daddy took the shotgun down to the basement bathroom.

Try living with that thought for a day.

I have no more real goals.  I can’t dive anymore, safely, even in a swimming pool.  I doubt I ever will again, and after a year and a half living this wretched existence I have trouble even remembering what it’s like.  I can’t teach it, which not only did I love but I took a lot of pride in.  By now I would have been a full-blown scuba instructor, and would have been tapped by the shop to actually be a trip leader to exotic destinations.  That’s all gone now.  Hell I don’t even like leaving the house anymore because I don’t want to be that far from a bathroom.  My bucket list of going to Thailand, Indonesia, Egypt, etc?  It’s like it never even existed anymore, like it was some former life.  The thought terrifies me now.

My friends?  What few I had are mostly gone.  The scuba shop folks have all drifted away except for two that I have lunch with maybe once a month.  Amy and I are very good friends with a couple we met on a dive trip that we have dinner with once a month when I don’t have to cancel because of my health.  I see R. for lunch once a month or so, and my buddy L. at Wells Fargo that I met in my assistant instructor class.  That’s about it – most of our friends that we see are Amy’s friends, who have honestly been a hell of a lot more supportive than my own.  Occasionally I get a text or something from someone, but for the most part they’ve all passed me by.  That’s pretty common too with cancer, and although it’s hard not to I don’t hold it against them.  It’s tough to deal with and you definitely find out who your friends are.  L. and that couple friend visited us in Arizona, did you know that?  L. twice actually.  The rest?  A few emails prompted by an email Amy asked the owner of our dive shop to send to all the employees and silence ever since.  My phone rings so little anymore I rarely leave the ringer on.

My life?  I struggle to get up, go to work every day, yawn my way through the afternoon most days and come home after 5.  I try to bury all the energy deficiency problems enough to have fun with my daughter and stay awake through dinner, do her bath and get her ready for bed and read her a book.  I try to talk to my wife most nights, or help with the dishes, but by then I’m usually so tired it’s just easier to go into my home office and kick back in my chair.  I say goodnight to Amy and then stay up another hour or so, because it’s the only real guilt-free time I get during the day (i.e., my resting is not taking away from time with Amy or Ariana) and then after taking all of my pills go to bed and do it the next day.  I have nothing to look forward to in a real sense anymore – I just “do,” basically for those around me.  The bills have to be paid.  I have a mortgage.  Ariana needs clothes.  Etc.