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.

Jesus, ouch dude.

In a feat of typical Rich timing I managed to pick up a cold right before my IViG infusion yesterday when my immune system was at its most compromised.  On the plus side the cold seems to be moving pretty fast.  The negative?  every time I cough it feels like someone is stabbing me in the lower back.  Was up almost every hour on the hour last night coughing and then muffling a scream into my pillows.  Really wish I had some idea of what in the Hell is going on with my lower back because I have never felt pain like this before.

Oh and it was a damp evening thanks to the night sweats, which I detest. Pretty sure that’s coming from the Velcade portion of the PACE chemotherapy regimen — I used to get that all the time during year one when I was doing weekly Velcade shots.

So yeah, pretty miserable night, but I made it to work. Stoned off my ass on Oxycodone and DayQuil, but here nonetheless.

I met with my oncologist yesterday as well and, thanks to my numbers continuing to improve on this VTD-PACE regimen, we’re doing round four.  I also signed the paperwork at that meeting for my collected stem cells to be delivered here from Arizona as that is still the plan (a stem cell transplant) following this fourth cycle of PACE. I’m still concerned about the six week break between the end of round four and the start of the stem cell transplant, but sounds like there’s nothing to be done about it — Dr. Matous wants me as recovered as possible before I walk into the transplant.

Here’s to hoping that my numbers don’t go nuts like they did at the start of the year when I had to take a few months off chemo for that stomach surgery.

 

PACE round four TBD

At the oncologist today for a Velcade shot and office visit to check blood counts.  Nothing’s needed yet but I have to come back in a few days since my absolute neutra-something count and my platelets are trending down.

According to Megan the NP, the Myeloma labs drawn today will dictate whether I do a fourth round of the VTD-PACE chemotherapy — should have the numbers by the end of the week.

Mixed on what I hope for.  After making a side joke about how I wish someone would tell my wife how hard these treatments are, Megan said each round of PACE is like doing induction chemotherapy for Leukemia.  That means nothing to me but apparently it’s a way to explain things to folks in the know?

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.

Many worlds I’ve come since I first left home.

Tomorrow I go back into the hospital for a week for the third, and most likely final, round of VTD-PACE. I’m not worried about the hospital stay, although that’s a pain in the ass, but more what comes after.

This weekend, my wife and daughter went up to Breckenridge with my wife’s parents.  I stayed at home, not really in any shape for outside activities or prolonged sun exposure. I spent most of that time thinking about things, which rarely is a puppydog and rainbows activity for me. And missing my daughter.

I dunno, folks.  Although I hadn’t even really recognized it, last week was my four-year anniversary of this nightmare.  I wish I had something to celebrate besides simply surviving, a verb that still seems so alien all these years later.  It seems to be the key word, though, especially this year and with these treatments.  Yeah, I’m still around … but in pretty rough shape.  I find it difficult, in fact impossible right now except in an abstract way, to even see the light as it were.  No matter how I slice it I’m staring down the barrel at several more hospital stays, doctors visits, tests … the list never seems to end. We’re off the rails now and in the “here be monsters” part of the map where the decisions are not written in stone like they used to be, and the choices make the earlier therapies seem like fun by comparison.

Another round of this?  Unlikely, but possible.  Dr. Matous never does four of these and rarely three, but this chemotherapy is all that has really made a dent in the last year so three it is.  A stem cell transplant next?  I’m at a zero level of excitement for that, but if it’s what the doctor wants I’ll certainly pay attention — I didn’t spend all the time and money to get top of the line healthcare to just ignore it.  CAR-T?  After the SCT, but apparently that’s got some serious hospital time as well.

If I think too long about it all I’m overcome with … well, I dunno.  It’s not depression, although there’s certainly some of that mixed into this.  What’s the word for an overwhelming sense of “fuck me running?”  Not sure.  I’ve felt for a while now like things have taken a turn this year, not necessarily in a good direction, and this is more of the same.  I think I’m in that stage a lot of patients seem to get to at some point where the treatments are so intensive both physically and time-wise that I’m rebelling, at least internally, at the toll it’s taking. I’m exhausted all of the time now and I have lower back pain so severe that even a double-dose of Oxycodone combined with some of Colorado’s finest isn’t getting rid of it, making getting up from a chair or couch an adventure in pain.

I have an MRI scheduled for my back tomorrow, and on the bright side, hey, I’ll get the good drugs to deal with the pain.  Generally when you answer the “what’s your pain at” with tears and a minor scream when you get out of the hospital bed they give you the good stuff.  So helloooooooo Fentanyl, it’s been too long.

I can’t seem to get back to a more carefree, happier headspace lately. I blame the steroids first and foremost, but it’s not as bad as it was before — perhaps because I know what to look for now?  I just bite my lip and boggle at the things my brain comes up with (bitter retorts, nasty replies, constant critical comments, etc.) and only let the good stuff come out of my mouth. But I can’t fake happy like I can fake politeness, and my emotional wall seems dangerously porous again. How do you really explain why you suddenly start crying out of nowhere when your thoughts stray to cancer and your child?  When you have to grit your teeth and clutch the armrests of your chair so tight you snap one in half to get your head back out of that particular hole?  How when most people daydream about summery stuff you’re idly pondering your own funeral?  It’s definitely a weird mental space to inhabit.

How do I understand and come to terms with the person I’ve become when the thoughts I have, as horrible as they are, come naturally?  I mentally go through a checklist of what to bring and do for this next week-long stint and without skipping a beat note to write a goodbye letter to my daughter.  A goodbye letter.  To my daughter.

Jesus.

You try it.  Maybe it’s just me but I don’t know how to deal with things like that without opening the floodgates.  Which is a good look on top of the bald head and hairless face, let me tell ‘ya.

But yeah, as my health has been much more precarious this year I’ve realized if I were taken suddenly there’s nothing but scattered writings and pieces — I need to know there’s more, a direct connection.  So I have some writing to do.

That should be fun.

Decided I want the Dead’s “Brokedown Palace” played at my funeral, although not in an obnoxious “OK everyone listen to this song” way. Just on loop until the festivities, as it were, start.  Probably quote this in the aforementioned letter as well.  Something powerful about this song that has always made it stick in my mind:

Fare you well, my honey
Fare you well, my only true one
All the birds that were singing
Are flown, except you alone

Gonna leave this brokedown palace
On my hands and my knees, I will roll, roll, roll
Make myself a bed by the waterside
In my time, in my time, I will roll, roll, roll

In a bed, in a bed
By the waterside I will lay my head
Listen to the river sing sweet songs
To rock my soul

River gonna take me, sing me sweet and sleepy
Sing me sweet and sleepy all the way back home
It’s a far gone lullaby sung many years ago
Mama, Mama, many worlds I’ve come since I first left home

Going home, going home
By the waterside I will rest my bones
Listen to the river sing sweet songs
To rock my soul

Going to plant a weeping willow
On the bank’s green edge it will grow, grow, grow
Singing a lullaby beside the water
Lovers come and go, the river will roll, roll, roll

Fare you well, fare you well
I love you more than words can tell
Listen to the river sing sweet songs
To rock my soul.

Yes I listen to the Dead AND metal that makes even metalheads cringe at its heaviness.  The 4,000+ songs on my phone are an exercise in schizophrenic music habits.

Anyhow I’m just scrapping the barnacles off the soul here and preparing myself for the hospital stay, so sorry for the negative spiral.  Sadly I actually had something I was going to end with here that was positive, but of course chemobrain ate it before I could get fingers to keys.  Sigh.  Well one bright note, the GOP has failed to destroy our broken but somewhat functional healthcare system, so at least my Twitter feed will go back to cancer-related stuff instead of the incessant political Tweets.

Little victories.

See you in the hospital.  I’ll be the one eating a Chicago dog with a mustard stain on my hospital gown.

 

Reflecting on a past life.

A week out from round three of VTD-PACE and I’m trying to get my head around things.

Went in for a blood test Tuesday morning as I’ve been exhausted since Friday and sleeping like the dead (normally I’m a very light sleeper). On Friday, for example, I came home early from work since I couldn’t keep my eyes open and zonked out on a couch. I woke up around 5 pm and asked my wife why the cleaning girls didn’t come only to find out not only did they but they cleaned around me and I didn’t wake up.

Unfortunately, or fortunately depending on how you view these things, my numbers didn’t qualify for a transfusion. While I was happy to not have to sit in the hospital getting blood all afternoon I am somewhat concerned about how tired I’ve been if it’s not being caused by low blood counts — I’m guessing it’s either the cancer itself or, more likely, the toll all of these chemotherapy drugs are taking on my body?  Who knows at this point.

I’ve also been dealing with an almost debilitating level of lower back pain that I cannot point to a cause for and say “aha!” Been treating that in more natural ways but a few nights I’ve broken down and dipped into the opioid well.

I know the number one lesson from sports is never look past your next opponent, but — actually, that’s wrong.  That’s the number two rule; the number one rule of sports is never treat a groin pull with Icy Hot. But anyways I know it’s a mistake but I’ve been spending a lot of time looking past this third cycle and at that stem cell transplant looming on the horizon.  I’m just not a big fan of the concept right now — the first one I did was a major pain in the ass and wasn’t that effective, so I’m not sure what a second one is supposed to accomplish.  We’ll see.  I’m not in the habit of getting the best healthcare I can find and then questioning it but this is a pretty major decision to just sign off on without some serious thought attached.

Things have been odd lately around me.  I feel like everything is a bit off, from flavors all the way to my initial reactions to events. As a result I’ve been more tight-lipped than usual because I don’t know where my reactions are coming from — the drugs? Depression? My brain is awash in chemicals and unfamiliar responses and I can’t tell any more.  One thought pervades through it all, however, and that is how much I am missing diving. Part of that is the purely hedonistic angle — life just isn’t nearly as fun for me without diving, and after four years I am Jonesing so badly it’s not funny.  I miss the serenity, the comradery, the feeling of being someone special when I was assisting classes or dive guiding at the aquarium here, the exotic locales, the water.

The WATER. Why I ever allowed myself to live in a land-locked state is beyond me.

One of my old favorite things to do was burn a few days vacation time and assist classes at a local reservoir during the week with a favorite instructor friend.  Not only did we work well together but after the students left we’d bust out the mini grill and cook up some burgers or brats and relax, go for a fun dive, etc.  Missing that bigtime.

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That’s me exploring outside a wreck in Cozumel, picture by a close friend.

Along with those yearnings has come a strong undercurrent of resentment about my disease. Granted that’s always been there to some degree, but lately it’s been more prevalent in my thoughts.  I would guess this is coming from all of the introspection this PACE therapy has forced upon me — I’m always feeling poorly these days and there’s no time to even recover before the next round and another week in the hospital, another slew of follow-up appointments, more transfusions, etc.  Combine that with the lack of hair and how I look lately and I feel like I’m not even Rich anymore, I’m just Myeloma.  As a result I’m resisting, mentally and emotionally, rebelling without a real target.

I miss my old life, who I used to be. I feel like I could be a better person now if I were allowed to return to it free of these diseased shackles but with the full knowledge of where I’ve been and how precarious things can be.

But that’s neither here nor there at the moment.  I have an appointment with the oncologists tomorrow morning and on the 19th we start the third and final round of VTD-PACE, followed by six weeks of recovery and then a stem cell transplant.  Time to focus on what’s right in front of me and just try to keep the dreams of the past life alive until I can get there again.

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.