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.

 

Fractured Thoughts.

Last Sunday night we came home from dinner to put Ariana to bed and let Amy study a bit. Remember that cold I picked up right before getting my monthly IViG infusion (which is supposed to bolster the immune system)? I had contacted my oncologist as the week progressed and it got worse to get some antibiotics just in case — Amy, who had the same cold, had been prescribed some so it made sense for me to do so as well.

“Just in case” happened Sunday night. As the night progressed I started not being able to slow my breathing down (which is a pretty terrifying feeling if you haven’t experienced it). Weighing all of our options we had a neighbor come over to be in the house while Ariana slept while my wife took me to the ER at PSL.  Sure enough, pneumonia.  It took about six hours to get my breathing back under control during which time I’m not afraid to admit I was terrified — I may not mind the concept of death but that is most decidedly NOT how I want to go out.

Interestingly they used Lasix to get my breathing under control — the drug that makes you pee like crazy?  Apparently it also gets liquid out of your lungs.

So anyhow, during the last cycle of PACE my doctors had done an MRI to see what was going on with the back pain I’ve had for a month. By that Sunday night dinner the pain had worsened to the point where I was using a cane just to move around and popping every painkiller I had. Over the course of a few days in the hospital while getting all antibiotic-y and trying to find a painkiller that actually did anything for my back, the docs decided to do some X-rays and it turns out that what the MRI somehow missed (or just wasn’t there yet) when it was done on July 19th) was a compression fracture of my L2 vertebrae.

My life is never simple.

So, net-net is I’m sitting here watching the sun come up but instead of being discharged today I’ll be having a procedure done called kyphoplasty. I’m trying not to be nervous but, um, SPINE SURGERY. I know it’s minimally invasive and problem incidence rates are super low but yeah, SPINE SURGERY. Not something I ever wanted to explore, but hey, Myeloma’s the gift that keeps on giving, right?

So are compression fractures from what I’ve read, incidentally. There’s now an above-average chance of getting another one.  Sighville.

That’s about all I’ve got right now.  I didn’t even find out they were able to schedule it until late last night when one of the nurses told me I was on liquid restrictions after midnight — still no clue when exactly I’m having this done today but I should learn more at the shift change in an hour.  Will post updates when I can.

Quick PACE Round 3 Wrap-Up.

I’ve been in recovery mode for the past week after being released from the hospital last Sunday.  Although I feel like I’m on the upswing now I’m still guarded, unsure entirely who’s talking when I speak.

I’m going to keep this entry more “just the facts, ma’am,” a trend I think I’ll be adopting a bit more here. Until I get the psych meds sorted and am not taking such massive doses of steroids I have a hard time trusting my thought process and the emotional wall springs massive leaks, which lately are driving me cringing from the thought of writing.  It just gets too damned dark.

Fun fucking disease.

So, some random facts:

  • Round three was like the others, only more so. That’s something that perhaps you just have to experience chemotherapy to get.
  • The MRI on my back showed nothing.  It still hurts, although it’s not as bad.  I can’t bend without pain unless I’m on a pain medication, which I will not take regularly.  Tried Fentanyl and OxyCodone and only the Oxy made a dent.
  • Had a ton of folks visit which was awesome.
  • Talked to my doctor who confirmed that if I handle it well (so far I have) that we could do a fourth round of this prior to another line of treatment.
  • Walked into the hospital with C. diff.  The antibiotic for that bit of fun is one of the worst tasting liquids I’ve ever had.  Four times a day.

That’s really about it. I felt like I was on death’s door after getting out of the hospital and I still have little to no energy, but the physical discomfort has at least mostly passed (except for the back pain).  Emotionally I’m a wreck, but then what’s new with that lately? I was hoping to try the swap to the new brain drug this coming week so as not to complicate things with the hospital, so we’ll see how that goes starting tomorrow.

The future has nothing to do with you.

Coming off a full-day stint at the hospital getting two units of blood yesterday and mentally preparing for VTD-PACE round two.  I’m at work, so I suppose given that measure of wellness I’m OK.  My mind is mush, however.

What do you think about when you’re hooked up to the IV? I try not to think at all, but reality creeps in when I’m not 100% distracted.  Have I had too many transfusions? Is this sustainable?

And how did I get here?

Even for those who have had cancer ruin someone close to them I think it’s hard to fully understand the struggle of living like this. As a lung cancer blogger I follow recently noted,

… there is no post to our traumatic stress. It is ongoing, or OTSD.

We focus on staying alive even as we worry–constantly–about dying. And, because we often don’t look as if we are ill, it is very, very difficult for those around us to fathom what it’s like to live on borrowed time.

Can you plan a vacation six months from now? Is it worth spending the money to get your dental work done? Will you be there when your kids graduate from high school?

As a society there is a great deal of emphasis on planning for the future. When you are living with cancer, it often feels as if the future has nothing to do with you.

So well put it’s almost criminal.

I’ve been feeling the sheer WEIGHT of it all lately. The frequent transfusions, the “this better work or rut-ro, Shaggy” chemotherapy (VTD-PACE), an upper GI problem we’ve been trying to nail down, the “fatigue” combo of the chemo drugs + Myeloma + low hemoglobin, yada yada yada.  It all has seemingly teamed up to test my mental and emotional fortitude. I’m not even sure how to describe it except that I imagine it’s similar to being in prison for life — you have to adjust. THIS is the definition of your life now, the new normal.  The anxiety of the next blood test, the realization of how precarious your life is and how sick you really are, the never-ending doctor appointments, mountains of prescriptions, etc.

It’s a lot to take in, and sometimes it feels like I’m carrying a second me on my back. I think I’ve used the analogy before but at times it’s like being in a snowglobe that someone (God?) just shook up for no obvious reason.

Life going OK, Rich?  Here!

*shake-a shake-a shake-a*

Now try it.

I go back into the hospital on Monday for VTD-PACE round two.  I’m a lot less nervous this time given how the last cycle went, but I can’t help but whisper a quiet “WHAT THE FUCKING FUCK?” to myself in the late hours of the night when the silence of the wife and daughter sleeping and the muted crackle of what I’m inhaling is my only company.  My mind transcends, giving me a perspective that is at once both intriguing and depressing. Questions flutter through my mind, epiphanies coming in such rapid succession that it’s hard to grab a hold of just one for too long.

How many have sat where I sit, wishing for a cure but knowing every single person who’s ever had cancer has wished the same? How’d that work out for them?

How much longer can I do this, really?

Is it wrong to wish sometimes that the cancer would just fucking win and I could be done with all of this?

Where the fuck are the Korean BBQ potato chips?

I think the transfusion thing is messing with me lately. My wife, my parents and even I have started questioning how sustainable this is when I’m needing weekly red blood cell units just to survive.  To SURVIVE.  That’s a little hardcore, but it’s the truth.  The simple reality is that my disease reached a point this year where it was either “kill it with fire” or, most likely, start dying in earnest. As a result these things, this chemo, the blood, etc., are needed.  Weekly doctor visits that turn into all-day transfusions, monthly IViG infusions, Zometa infusions, the daily cabinet-worth of prescriptions. Sacrificing, in various ways, the future for the present just to have a chance to experience that future.

Sorry, I’m probably supposed to paint a rosier picture of being Doomed, aren’t I?

Snicker.

I’m not in a terrible mood, really. I’m unhappy, for sure, but who the fuck is happy about having cancer? OK I know some people play the “cancer has improved my life” card, but that’s a minority in my experience. It’s not something you can just ignore unless you willfully ignore it.  It’s always there, tainting everything it can get its insidious little claws on. It forces constant reflection, questioning, fuels bizarre and dangerous at times thoughts.

I flip through my Twitter feed at least once a day, noting what’s on everyone’s mind in this horrible little world. One theme that comes up a lot is whether or not it’s OK to use combat-related terms to describe having cancer. The objection, if you couldn’t figure it out, comes from when someone inevitably dies from this — nobody wants to think of those folks as “losers,” you know?  But it is a battle, for every fucking inch. Physically, mentally, emotionally, daily. That’s the part that I don’t feel equipped to describe, at least with simple words on a screen.

How do you do it every day knowing there’s no end in sight, no relief coming?

How do you get up every day knowing that and function as a “normal” person, a father, a worker drone, a human being?  What do you do when something takes away your future and writes you a new (and horrible) one?

I dunno.  So far I just fight.  I take it day by day, as I’ve learned through going through this, but you can’t stop not thinking about the future forever. And right now mine is 1-2 more in-patient cycles of VTD-PACE followed most like by a stem cell transplant and then … I dunno.  Neither do my doctors.

As a result I’ve become what I call a pocket hedonist.  I take pleasure when I can and where I can, no longer caring (within reason) who thinks what about it.  Yesterday, for example, I ordered a pizza from Fat Sully’s and got a 20″ for the nurses in the infusion center as well.  I enjoy doing things like that.  I write here, although on days like today I wonder who I really could be helping by putting this bile to paper besides myself.

I think this is the death of hope. It feels like that.  The odd thing is in its absence I simply feel like an automaton going through the motions instead of someone crushed with despair.  I’m tired of hope.  It’s exhausting, the cycle of hope – disappointment – hope, and I’m tired the minute I wake up every day these days. I’d rather just be me, although I wonder if I’ve permanently lost who that is in all of this.

Instead, I simply DO. I no longer feel the need to ascribe my actions to something that keeps letting me down. I take stock every day of what I’m capable of and I just focus on continuous motion.

Is that wrong?  Am I doing cancer wrong?  Inquiring minds want to know!

In the meantime, I’ll just be moseying along and trying not to think.

 

 

 

Insert title here.

Got a few things to get into today, so let’s get to it.

First, the good news.  Although premature, I have my first results from the VTD-PACE “kill it with fire” chemotherapy, and it looks like it’s actually working!  My oncologist is stoked (his exact word), in fact:

  • M-Spike down to 3.1 from 3.9
  • IgG down to 4,718 from 5,363
  • Kappa down to 575 from 1,314

The down-from’s are late April and May #’s. Given that the latest numbers should lag treatment by about two weeks, according to my oncologist team, that’s a big deal that they are dropping so rapidly already. It’s even a bigger positive given that I tolerated the treatment at, as the nurse practitioner said, a 9.5 out of 10 — basically breezing through it. Doesn’t feel like that, but I know it could be much worse. Outside of reactions to the drugs my biggest problems have been low blood counts (which are currently rebounding, finally), exhaustion and nausea.

So yay me.

I am having one problem that hopefully we addressed yesterday. Ever since treatment started I’ve had this weird nausea and upper stomach area pain where it hits instantly when I crunch my stomach forward — how to explain this, hmm.  Like when you are sitting down and lean forward on a table or desk? I get instantly sick to my stomach to the point where I could easily throw up.  I have a prescription for a new med to take which I’ve conveniently forgotten the name of and we’re doubling the Omeprazole dosage I already take for chemo-related GI stuff (I think it’s the steroids that cause that but who knows).  Hoping this new regimen works because I’m at a desk either working or playing for most of my waking hours.

The next cycle of VTD-PACE begins on the 19th. After discussing it with Megan (the NP) and my wife I’m going to do it in-patient again. The oncology team doesn’t care either way, but since I don’t mind the hospital it just seems safer to me. I think I walk around partially dehydrated most days and I’m concerned that doing this treatment outpatient, besides just being a pain in the ass given how far I live from the clinic, might put me in danger of the things they watch out for in the hospital (including some nastiness if you are dehydrated, apparently). I also have no easy way of getting down there if, for example, I need a 4 am transfusion and I’m at home.

OK so I’m only doing it in-patient because I can order ramen and Fat Sully’s pizza.  Shhhh.

BTW I’m currently in the process of putting together a long-overdue Excel spreadsheet showing my #’s for the past four years combined with what treatments I was on and when.  I’ll publish them here when I’m done — just waiting for some data from my current oncologist.  Plus I need to launch an archaeological mission under my desk to find all of my lab result paperwork from the first year of having this disease. I’ll wear a cool hat and bring a bullwhip. And if history’s any guide I’ll smash my head into the bottom of my desk as usual and curse like a sailor.

Next up, ASCO. Although ASCO is, according to my oncologists, usually more targeted at the big four cancers, there were two huge announcements regarding CAR-T successes from this last one.  First, Nanjing Legend Biotech announced startling results from an early stage trial of their anti-BCMA CAR-T cell drug, LCAR-B38M. Thirty-three out of 35 patients (94%) went into remission with an objective response rate of 100% — crazy stuff.  As my oncologist and several others on Twitter I’ve read have noted, however, Chinese trial results need to be taken with a grain of salt.

Closer to home, Bluebird Bio and Celgene announced amazing results about THEIR anti-BCMA CAR-T therapy, BB2121.  In a clinical trial of patients no longer responsive to a prior stem cell transplant and a median of seven prior therapies, the 15 patients (out of 18) that received the highest doses had some great response rates. Twenty-seven percent achieved a complete response, 47% achieved a very good partial response and the remaining four patients were in partial response.

As noted before my oncologist’s plan is to do 1-2 more VTD-PACE cycles followed by a stem cell transplant (my second) and then a CAR-T clinical trial, so it’s really encouraging to see this.  I also learned a tiny bit more about CAR-T trials this week — if I have to travel for one, for example, I need to plan on about a month.  Basically the process is similar in protocol to a stem cell transplant as I understand it — while your blood is shipped out to have whatever voodoo magic done to it that they do, you are in the hospital doing chemo to prepare to receive it back and then watched like a hawk.

But that’s a problem for another day.

Alright, time to dip into the jar o’ pithiness. Was twisted pretty good the other night and managed to write down one of the many epiphanies I have on nights like that. Here’s what I woke up to find:

Every day I’m around is one day older the little girl crying and screaming “I want my daddy” is in my nightmares about my death from cancer and how it will impact her life.  If I had to distill why I can’t think about my future without breaking down, it’s that.  That’s it, the entirety.  I feel like no matter what I do I cannot NOT cause her pain.  Does that make sense?

And yes, I do have the skill to make an entire room go from normal to awkward in one paragraph — why do you ask? Snicker.

Ariana (my daughter) has been on my mind a lot lately — with all of her activities plus the week-long hospitalizations and “salvage” chemos these days it’s hard not to. She just graduated from preschool, which was adorable. At her pre-kindergarten orientation they gave her a t-shirt that claimed “Class of 2030.” Crazy. She’s also in a new phase where she wants to help with everything I’m doing now, which I need to remember to encourage as much as possible.

Problem is, and this is unavoidable, it obviously brings up hard emotions as well. You have to understand my mindset.  For example there’s a new video game coming out in November that I skipped pre-ordering because my first mental instinct was to ask if I’ll even be around this November … pretty sure I will be but this is how I see the future beyond a few days out. I want to be here in 2030 to see her graduate, God damnit. I want to teach her to drive, be her best friend when she has bad days in school, and help teach her algebra.  I want to make her feel better about having to have braces, and share with her my favorite music and movies.  I want to take drum lessons with her, and most of all go on dive vacations with her.

Lately we’ve been doing duets of Disney tunes, mostly the Moana song “How Far I’ll Go.” She sings it all the time so I learned it on guitar the other night so we can play together. I love this but it breaks my heart too, you know?  Maybe she becomes a famous singer someday — but I won’t be here to see it, most likely.  That’s the problem with cancer.

Oh and yes I know there’s a 4-year-old and her daddy who’ve become internet-famous doing this, BTW. Ariana sings better than that girl and I seriously doubt her dad has anywhere near the Iron Maiden collection I have, so screw them and their infinite cuteness and talent.

Seriously, though, I just hope she remembers those nights we sat on the couch and how I smiled at her, you know? Maybe someday she’ll understand that smile and the tears that I was trying to hide.

All the good in my life, the things I truly care about, always have a “but …” tacked on the end. I know in some ways it keeps me grounded but it’s too much — it taints everything, gives it all a metallic aftertaste.  Thanks rare cancer! So yeah … every day I get is one more day closer to my goals (experiencing her life with her) and one day older and more capable, at least in my mind, she is of dealing with the aftermath should I pass away from this fucking disaster.

I really need to start writing down more of what I think about in the wee hours of the night when I’m happily medicated. I hate waking up and knowing I came up with some new Earth-shattering thought but forgot what it was.

Lastly, and so as not to end on a total bummer, I’ve decided that regardless of my blood counts I want to go diving again. Not tomorrow, but perhaps after the stem cell transplant I’m going to reassess where I’m at and see if my doctor will prescribe antibiotics and anti-fungals prophylactically so I can safely do so.  I’m in dire need of not only a vacation but the feeling of diving again — I can’t take it anymore. I want to float, weightless, without beeps and rings and doctor visits and text messages and chemotherapy and the rest of this turned-south always connected never-good-news life I’m trodding through.

Going into the usual Social Media blackout for the weekend, so have fun and see you on the flip side.  Next doctor’s appointment is next Wednesday so I’d imagine I’ll be writing something around then-ish.

Like I’m almost gone, yeah.

Sorry I didn’t post this on Tuesday; been in a bad headspace this week and wasn’t in the mood to write. Not sure I’m really ready either but I need to get a few things down and out of my brain basket.

So far so good on the VTD-PACE front.  I’ve been fairly tired but mostly just dealing with the repercussions of the massive Dex dosage.  I didn’t go into the exact dosing of this witch’s brew, but it’s:

  • Days 1, 4, 8, and 11: Bortezomib 1mg/m2 IV push over 3–5 seconds or SC
  • Day 1–4: Thalidomide 50–200mg orally daily at bedtime + dexamethasone 40mg orally daily
  • Days 1–4: Cyclophosphamide 300mg/m2 continuous IV infusion over 24 hours daily + etoposide 30mg/m2 continuous IV infusion over 24 hours daily + cisplatin 7.5mg/m2 continuous IV infusion over 24 hours daily + doxorubicin 7.5mg/m2 continuous IV infusion over 24 hours daily.

That was taken from here, BTW, which is a pretty handy web page for chemotherapy.

I’m not feeling good.  The problem is I’m not sure how to draw a demarcation line between what is happening as a result of the chemo versus what is happening as a result of marital issues.  I feel pretty deflated, at least from the previous week, and I can’t easily sort out what goes into what pile o’ sucking as easily as I wish.

Physically I feel pretty run-down, but OK for the most part.  GI is fine, blood counts have actually gone up slightly since last Friday when I was released (i.e., no transfusions needed) although they are all still pretty low.  Nausea daily, including a weird almost insta-vomit situation when I sit crunched forward a bit.  Pain is up there but I had a Neulasta shot Sunday which I think is the guilty party there.

My good attitude is pretty much gone, sadly, which I mostly attribute to my marriage. Not going into super details here but the net-net is that after so many months of peace, mostly driven (IMHO) by me beta’ing out of most issues to somehow make up for 3.5 years of Dex-driven Rich, we got into it this week and I’ve come to realize a few things that I had hoped were in the rear-view not only aren’t, but probably never will be. The unfortunate thing about trust is that once broken in a relationship, even a bad one (actually especially a bad one), there’s so much scar tissue left behind that it’s hard, if not impossible, to ever really get back to a pre-trust-issue place.

My wife thinks I’m Dexing out again. I may be, but I also was feeling really positive about things until Tuesday night and I’m not convinced she’s correct so much as anticipating and reacting to protect herself from a potential, not a reality. I don’t feel snippy, angry, negative (well I didn’t until that night, anyways).  This past weekend I just took it easy, watched my mouth and did the usual steroid thing the Doomed do when given this much of this crap:

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I posted that on Facebook and immediately had 8-9 friends tell me to come over.

Further, I don’t see any issues I brought up during our argument as anything abnormal. Sadly, although I’m happy that I chose multiple times to back off and cool down before I let something un-take-backable fly, all of this doubt has ruined my progress mentally/emotionally and left me adrift.  Now I feel like an enemy combatant again behind the lines when I’m home, and that sucks.  Mostly because I finally had let some hope creep in that we could reverse course on circling the drain, and every ounce of that is now gone.

Just once I would like actual SUPPORT during chemotherapy. Driving, errands, cooking — that’s great. It’s not SUPPORT, however, it’s busywork that would have been done anyway simply due to me working 50 a week.  I’ve driven myself to just about everything except some stem cell-related stuff years ago and roughly 2-3 appointments/hospitalizations. In four years.

A hand held.  Questions asked borne from caring, not rote. A hug. Hell I get more of that stuff from random employees at the oncologist.  Instead at home I deal with never-ending verbal reminders of how I ruined someone’s life and subtle but obvious tells that no matter what I do, how kind I am, there is no way back.  From a place that Dex took me, which seems kind of unfair.  Also gone with the rest is the faith that post-me my legacy will be my daughter being told how awesome I was, not how much of a steroided-out prick I was by someone who fell out of love years ago in this and is incapable of understanding how important that legacy is to me.

Granted I never was Mother Theresa but I wasn’t THAT fucking bad.

Tell you what — when you go through hard times you really do see what kind of human beings are around you.  Also, and this comes from someone who won a lot more in poker than they ever lost, someone sober’s first reaction is almost always the honest one. Tuck that away somewhere.

Unfortunately with my peace of mind went all of my serenity and ability to truly relax and rest at home, which is a shitty thing when you are trying to focus on a giant dose of chemo and effects that could be coming.

You get used to it, I guess.

I’m wondering when the other shoe drops with the cancer treatment.  This has caused a decent amount of anxiety on top of everything else. I tried to cancel a lab appointment next Monday, for example (that’s a two hour commitment to me given where I work and live versus my oncologist) and was told that they need to keep it to monitor my counts tightly. So that’s like two weeks post-hospitalization?

Anyhow, met with a doc for a scheduled follow-up Tuesday who had nothing new to add except for prescriptions for an anti-fungal and a anti-bacterial. Have another meeting and more tests with another doctor on Friday.

Had a bunch of epiphanies about life in the last few weeks that I was going to consolidate here but I don’t feel like it’s the time to get into those.  I did however decide that at my funeral, assuming anyone actually listens to my requests, they play this song.  Posted this up Friday when I left the hospital:

Was listening to that last Friday and realized that it meant a lot more to me than just a allegory for leaving the hospital after a week.

Sometimes I feel
Like I’m almost gone, yeah
A long, long, long way
Way from my home, yeah

Indeed.

In-patient VTD-PACE, last night.

So here we are, last night (knock on wood) of the in-patient portion of VRD-PACE. Yeah I’m about ready to go stir crazy here so good timing.

Honestly, and kind of strangely, I’ve been in a really good mood all week. I’m walking a lot more than I usually do in the hospital (granted, I’ve been in 6-7 times in the last year for respiratory stuff and walking was not on MY top 5 list on those trips), cheerful.  Mostly bored, really.  I think the hardest part of this has been a combination of the steroids and the isolation — for all that I and others were worried about side effects, those apparently come next week. This week at Presbyterian St. Luke’s has mostly been about keeping occupied and not nauseous.

Although if you’re going to do inpatient chemo for 4 nights and 5 days, do it RIGHT.  Please note the following picture will offend and perhaps increase nausea in the Doomed who can’t look at any non-raw non-GMO non-vegan non-flavorful meal.  Or Darth Vader:

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The despecialized (un-re-edited) version of Star Wars and a 12″ from Fat Sully’s. Probably not the best anti-nausea fighter. Or the healthiest meal. Or the easiest to eat in a hospital bed, for that matter.

I care.

Awesome ‘za.

Hey when you live sort of in the sticks, being downtown with 3rd party delivery service is like a dream come true. Had a wicked bowl o’ ramen last night with some pork buns.

So yeah, not too bad really. The steroids have been the hardest medication to deal with so far. Forty milligrams a DAY of Dex has taken me beyond restless leg syndrome and into a Steve Martin comedy bit.

giphy1

Once I get to sleep I can stay there like a zombie, but being a night owl it’s soooo hard to actually get to sleep here for me. Trying an Ambien tonight … not a giant fan but I really cannot take another night of 40 laps around the onco-ward all tired but so jittery I can’t shut my brain off.

Also thanks to all those who swore to sneak me in some, erm, greener products. Appreciate and I love you but probably best if I don’t get booted out of the hospital, lulz.

Had some visitors today which was awesome (thanks!) and … I dunno what else, really.  This much time in a hospital all flows together until you aren’t sure what day it is and whether you’re coming or going, you know? I play games, watch movies off the home theater PC on the laptop and try not to puke.  I almost got caught today, that sudden salivation feeling you get, but the nurses responded so quick it was laughable.  They really have been great here: Julia, Tara, Campbell, Shasta, Rita, Kellie (note to self, check that list). I have to come in Sunday, Monday and Tuesday (FFS) for appointments so I’ll bring them something special.

You spend a lot of time thinking in the hospital, or at least I do. I’ve been wondering lately if cancer is just how we die now. In lieu of being eaten by saber-toothed tigers maybe this is the “new normal?” It’s hard to argue with some of the startling facts you find of incidence rates these days. Granted I would prefer, given the choice, of going in a slightly more pleasant way, but perhaps this is what we have to get used to. I can accept that, I think. In fact really the only cancer that truly gets me down, that I have no defense against, is childhood cancer. As mentioned before it’s just too goddamn much, too unfair.

I’m also having trouble not falling into the sheer hate aimed at the GOP lately. I try to see the best in folks, if I have time, but it’s been really tough for me lately.  I’ve always been a fiscal conservative and socially moderate agnostic, so I left the parties behind decades ago to force them to market better candidates to me.

Yeah, we see how well that plan worked out.

Seriously though — I’m reading an article today about some Washington Congresswoman and you just know, you KNOW, that if one of her three kiddos was diagnosed with our special sort of fun she’d be the first in line voting NO on this crap. Instead she’d be out sponsoring bills for medical marijuana, better healthcare, etc.

It’s just so fucking selfish, and as I come closer to the end — even if not a cancer-based one, who knows? — I find that flavor of selfishness so fucking disgusting that I just want to slap these people back to reality.  Why can’t they leave what’s in place there and just FIX it? That gets you re-elected. This scorched Earth policy is not. And as I reach further out from this little room on Twitter and Facebook and read story after heartbreaking story it becomes harder to control my disappointment and anger. Representative government, indeed.

If we don’t try to keep each other healthy, what’s the fucking point?  To die with the most toys like some Egyptian pharaoh?  For the love of the Almighty (whatever), c’mon already.

I don’t get it. And I apologize, for what it’s worth, for being a tiny bit political here — this week’s isolation has brought it out of me a bit on Twitter and I don’t like it.

Anywho, going home tomorrow night — my 24-hour chemos end at 4-5ish pm and then I’ll … well, “bolt” is a bad word for being released into southbound 5 pm Friday traffic, but I’ll be bolting as much as I can =)  I miss my daughter and wife, the comfort of their hugs. How they smell.  That sheer “rightness” of being home with them where I am supposed to be. I wish Mischief was there to greet me too but that’s a story for another time.

Talk to you soon and thanks for the kind DM’s on Twitter, comments here and other stuff — it means more than, well, actually it means what most of you already know.  but it’s pretty new to me so thanks and hugs.