No longer playing by the rules.

I’m torn by my attitude lately. On the one hand I’m wearing the masks outdoors like some stock video of Chinese city workers commuting on CNN, hand sanitizer in a pocket and avoiding all sorts of immunodeficient evils that you are supposed to avoid after car-t treatment or a bone marrow transplant.

But there’s this other part of me that looks at my daughter and thinks “fuck that, and fuck that life.”

I did that while still in Nashville, going to the zoo with Ari. I wasn’t going to go and was ready to just sleep all day but she seemed so sad when I tried to explain it. Little girls just have that guilt trip voice down pat, where you feel like you are some barbaric monster about to ruin their lives and creating a moment they’ll be telling a therapist about somewhere down the road. So I put up a tiny bit of resistance and then just said ‘what am I doing? Screw it, I’m going to the zoo with my daughter today” and she just lit up, jumping around yelling “daddy’s coming to the zoo! Daddy’s coming to the zoo!”

And outside of fucking up my shoulder when I accidentally fell down, we had a wonderful day. Maybe it’s the reason I ended up back in the hospital for a few days with pneumonia, I don’t know.  But I know I’d make that same call again in a heartbeat.

I also went swimming with her a few times in the hotel pool.  You should have seen her eyes light up at that prospect. My wife was super surprised as well, but as I’ve said I changed last year. Patient or not, deathbed or not, I’m tired of watching what remains of my life coast by from uncomfortable beds and zombie’d out from the painkillers. Fuck it. I want to go diving soon as well, although my immune system is not ready for that yet (or even close).

This car-t treatment may or may not have worked.  We got super-preliminary numbers last Friday that looked decent, anyways: on May 22nd last month I had a m-spike of 3.02, which by June 15th (car-t cells infused on May 29th) had dropped 25% to 2.27.  I should get solid preliminary numbers this week or early next when they’ve processed the bone marrow biopsy from Wednesday (ouch!), skeletal survey, urine and bazillion vials of blood (I posted a pick on Instagram and Twitter).

My weight has fallen again, although I expect that to rebound as my appetite returns (assuming it will). The food at Sarah Cannon sucks syphilitic monkeys nuts (sorry, Sarah Cannon “chefs”) but the stuff was almost inedible. I ordered out when possible but wasn’t super hungry, and after I got out my favorite places were inaccessible due to my immune system (salad bar at a Brazilian steak house, sushi, etc.).  If that doesn’t make sense, while you are immunsuppressed you aren’t supposed to eat raw food, food that’s been sitting around or vegetables and fruits that haven’t had to be peeled (i.e., may not have been washed properly).

Ah well.

Anywho, outside of gastroenterological / immune system concerns … I’m sick of existing like this. And that’s really what it’s been … just an existence, a survival.  This having myeloma ridiculousness isn’t even living. And I’m tired of this disease not only dictating most of my life but getting to weigh in on my relationship with my daughter as well. Having her out in Nashville the past few weeks, taking her to Jamba Juice every morning I could and sneaking in some Dunkin Donut trips too, talking constantly, etc., made the whole experience a pleasure instead of a pain in the ass. Except literally (read: bone marrow biopsy). I even Jerry-rigged the TV in the suite to allow my laptop to work on it so she could watch her shows on Netflix and my Plex server in the hotel. This whole deal has brought us closer even though towards the end you could tell she (and my wife) had had about enough of living in hotels.

Definitely not looking forward to dealing with my parents when I get back into town. They didn’t even bother visiting while I was in Nashville for the five weeks we were in town. On the other hand the programmer and personal friend at our family company has come out twice from Florida, two friends of mine from Colorado came out for several days to hang out, and even my wife, who I’m still in a rocky place with, came for the entire 3 weeks I was out of the hospital (1 before and 2 after, ending when we left together). I had cousins twice removed emailing and texting. Yet I have heard nothing from my own parents.

So yeah, that should be a fun reunion.  Yay for family businesses.

I wanted to thank an online friend here as well … Pam, thank you so much for the card. Not only did it make me laugh but I feel like an ass for not saying “thank you” earlier … found your opened card in my paperwork file in my computer bag (where I saved the important stuff from Nashville so I wouldn’t lose it) today and realized chemobrain had struck again and I hadn’t sent you a personal thank you.  So from the heart, sincerely, thank you!

Anyways, back to what I was talking about. Going to the zoo in my masked face did turn out to be a gift-in-disguise in another way as well, as a wonderful woman walked up to my wife and I and asked if I had had a transplant. Turns out she has myeloma too and we talked for a while, promising to keep in touch with each others’ blogs. This has been a trip for things like that. Also although she still hasn’t added me as a friend (lazy fucker) on Facebook to stay in touch, I had this amazing nurse named Kristen (sp?) at Sarah Cannon with whom I really had some good talks with. She started reading my blog, which never fails to humble me, and I felt like I made a friend.  I think she’s one of the few that already gets it but understanding your patients is sooooo important, especially in oncology. She’s also one of the top healthcare providers I’ve ever dealt with, so hopefully we get to stay in touch.

Having done this now for 5 years (cancerversary is July 13th) you realize that you don’t meet that many healthcare providers that actually give a shit.  Sure, most care to a degree, but few really see you as a person. I get that, I guess. I don’t think I have a strong enough emotional wall (even before I was gifted with the true joy that is myeloma) to deal with being a healthcare provider, so I understand keeping your distance. That’s why I have so much respect for those that you can tell actually care whether you exist.

Feel like I had a ton more to write about but I’m at a loss at the moment, drained from travel and the stress and everything else recently. Being back home now (well for less than 24 hours) is of course surreal after being gone for just over five weeks, especially with the scanxiety of the car-t initial results as I try to get all of the receipts collected and organized for insurance companies and for the first night in 3 weeks haven’t had to sleep on a sofa bed (Amy and Ari got the comfy bed, I martyr’ed myself much to my and my back’s chagrin). Did this work? Or are we at the same place with lower numbers? Why do sofa sleepers suck so much? And why the fuck does Nashville water smell like the 6th ring of Hell to me?

Seriously, it’s gross. Like dead fish gross. Can’t tell you how happy I am to be back in the land of water that doesn’t smell like ass.

I dunno. My mind is barely functional right now and I’m walking around like an automaton with a limp just going through the motions. Productive but not really here, you know?

Well fingers crossed. I did the trial, fought the fight for future myeloma victims if you want to look at it that way. I hope we’re all happy with the results.

 

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.