3 a.m. Skittles

It’s been somewhat of a crazy few weeks that I haven’t entirely, or at all for that matter, processed, but I figured I should get something down here before I start forgetting things.

So a few weeks ago Amy and I came out to Nashville for my final week of tests. These set up a “baseline” to compare to after the procedure and included all sorts of blood tests, a PET scan and a bone marrow biopsy. Once those were done I went through three days of lymphodepletion chemotherapy of fludarabine and cyclophosphamide which wasn’t too bad (23rd-25th) — this chemotherapy prepares your body to receive the re-engineered T-cells.  Amy took off the next day back home, and the day after I Uber’ed to the hospital (the 28th). On the 29th I was infused with my re-engineered T-cells.

I’m now genetically modified. Bizarre.

Oh another thing to mention that’s kind of interesting is that they use the HIV virus to reprogram your T cells. As a result for a while I’ll test HIV-positive.

Leading up to this mentally and emotionally was rough. My parents decided to pick this time to start an immense amount of unsupportive, toxic drama even with me begging them to knock it off and see the bigger picture. I was terrified of being away from my daughter for this long (3 weeks) and how that was going to affect both her and me, frightened for my marriage (parent drama factors into that one, but that’s a while ‘nother Oprah), and of course scared about this procedure. We’re well beyond the part of the map where it says “Here Be Monsters” with this Car-t stuff.  No long-term data on efficacy or effects.  No guarantees about how this is going to work for me, and what to do if it doesn’t have stellar results.

Even the morning of the flight out here I questioned whether I should be doing this. In the end, though, the opportunity was just too good to say no and so many had given so much so I could get this chance. As I’ve talked about before there’s a giant guilt factor associated with cancer from all different aspects, and I realized this was a new one — that I was being given a chance to take part in a clinical trial that was a life or death chance for people who’s cancer was as far along as mine was. What right did I have to come this far just to throw it away?

So on the 29th I got my cells back, which just like a bone marrow transplant is somewhat of a non-event. I got my cells around 11:30 am and spent most of the day reading, until about 5:30pm when I noticed I was having wicked tinnitus and nausea. I called the nurse and my temperature had shot up to almost 103, I was dizzy, felt weak, etc. This is the dreaded cytokene release syndrome (“storm” or “CRS”), which to me was the scariest part of the process — the problem is you don’t know when or even if you’ll experience a storm. One nurse told me it’s a good thing to get one as it implies the treatment is working (an old wive’s tale as far as most medicines go, but who knows with Car-t). They can happen as soon as I had mine, or weeks after you leave the hospital (Jesus, that would have been terrifying). You can even have more than one, apparently.

All I know is mine was fucking awful. My brain went into full-on scrambled egg mode and I couldn’t even answer simple questions like who the president was or what year it was. I also had this super-annoying sensation where I felt like I had to urinate when I didn’t, which had me constantly going to and from the bathroom.

Somehow I managed to get to sleep that night only to wake up with a headache so bad I couldn’t see straight and just brutal nausea. We were able to medicate most of that away but I couldn’t convince the staff to give me any painkillers more fun than Oxycontin because my heart rate was dropping low enough that they were considering sending me to the ICU. I slept off and on that day but sleeping with a severe headache is, at least for me, just about impossible.

Then on Thursday things started to clear up, and by Friday I had an appetite and was able to keep some food down.

Since then it’s been mostly quiet.  I’ve had three friends who came out here on their own dime just to hang out, which meant the world to me, and all three of us had some great talks.  I’ve had a fairly high success rate bribing the nursing staff to grab me Starbucks (there’s one downstairs) as well, and I’ve just been reading, sleeping and gaming a bit. Just like with a bone marrow transplant, boredom is the real bitch.  Oh, and a woman I’ve talked to online several times, Cherie, came to visit which was awesome. Cherie is in the same clinical trial I’m in and in her case the treatment completely eradicated her disease. As in Myeloma-free. She and others like her are why this particular clinical trial is so sought after.

I go for late-night walks around the floor every night with my Kindle and enough change to get a bottle of water and some munchies.  It’s a poor replacement for when I was home and would grab a glass full of frozen mixed fruit every night (my snack of choice). Although there is something to be said for Skittles and Twix bars at 3 a.m.

Here we go (again).

Sunday morning I take off for Nashville for the “big” trip.  I’ll have a week of evaluations to make absolutely sure I’m eligible for the study and to establish baselines starting Monday, followed by 3 days of IV chemotherapy (fludarabine and cyclophosphamide) to remove some of my own immune cells and make my body ready to accept the CAR-T cells.  I go into the hospital the next day (the 28th) and on the 29th I’m given my re-engineered T cells back.

At that point I’m GMO. There’s an irony to that, for those who know my wife and I, that I find funny. About the only funny part to this, really.

After about two weeks of being monitored in-patient, I’m released from the hospital but have to stay in Nashville for another two weeks or so to be monitored regularly for side effects. Assuming everything’s OK at that point I get to come home.

I don’t know how much I want to get into here today (guess we’ll find out).  I’m having what I call an “emotional” day today, where everything is making me sad. I’ve had a horrific week or two with my family, truly awful, during which I’ve penned multiple far-too-long emails begging them to have a heart and understand what I’m going through. On top of that the reality that I won’t see my daughter for three weeks at least is kicking in and it’s killing me. I’m feeling the pressure of this clinical trial and that I might fuck it up somehow after all of this effort on so many people’s parts, or that it won’t work and it will end up being the final disappointment in a long chain of them.

When I did my bone marrow transplant back in 2014 I not only had my wife and daughter out in Scottsdale with me but my wife’s step-father as well. I felt taking care of, and I knew if something went wrong or I just needed a hug or something I could just pick up the phone. Now, going through this nightmare, I’ll be alone while in the hospital. I’m stressed about that as well but more just saddened by it.  I mean what if something goes really wrong?  I won’t even be able to give a last hug or say goodbye to my daughter.

Yeah, and on that note I think we’re all done with this entry before I dig an emotional hole I won’t be able to get out of.  I’ll update here as much as possible while in Nashville, but for more frequent updates please keep an eye on my Twitter feed instead.

A new low.

This is a hard entry for me to write. Normally I just expose my life without a care, a habit born of almost three decades as a journalist and then a blogger. But I’ve always self-edited, keeping the most embarrassing parts private — although granted what I consider embarrassing and others might is apparently wildly different at times.

But for example, I don’t go into my marital issues here. It’s not really the point of the blog and detracts from what I’m doing with this, which is a bit more targeted.

Today’s topic I can’t really avoid, however, so strap yourselves in.

When last I wrote I was just about to start radiation treatments for tumorous growths found in my lower back and left hip. I’m happy to report that after 10 sessions those pains are gone; however, I don’t recall ever feeling so bad, so consistently or for so long as I have since. Only in the last few days have I stopped feeling nauseous 24/7 and I’m still sleeping a ton. That was a humiliating and unpleasant experience that I hope to never repeat, although chances are I’ll have to at some point.

*shudder*

As I was saying I’ve felt like a dumpster fire since, however — so much, in fact, that I ended up going into the hospital for a few nights a few weeks ago while they ran a barrage of tests to make sure my heart was still OK, lungs, etc. I know for a fact something was/is wrong, although whether it was aftershocks of the radiation treatment or not who knows. Unable to eat, no energy, soaking everything I’m wearing multiple times a night in sweat, chills so bad I was afraid I’d break a tooth … yeah that’s not normal even for a cancer patient. But, other than needing some blood supplements everything came out negative and I asked them to just discharge me after a few nights since I can sleep at home a hell of a lot better than at the hospital and they couldn’t find anything. I’m still suffering from a crushing amount of fatigue though and my energy levels are non-existent.

The doctors did put me back on a steroid, who’s name I’ve conveniently now forgotten, in case what was causing all of this was being weened off of the Prednisone (sp?) I was taking too quickly.

No news from either of the sites running the CAR-T clinical trial I’m trying to get into. The radiation treatments put that on the back-burner for now but with that in the rear-view it’s going to be time to deal with again. I’m honestly not sure what to do at this point.

Ariana, my daughter, has been so sweet during this time. I basically have dinner, if I can stomach it, and then go lie down upstairs, and she sneaks up when my wife isn’t looking to watch cooking shows with me. Granted letting her watch Hell’s Kitchen (Hulu binger, what can I say) isn’t going to win me any parent of the year awards but we enjoy it. She has her first therapy session at the end of this month — sort of preparation for a parent dying thing that was recommended to us. I can’t really focus on that right now though because just the thought of my illness being the reason she has to do that makes me want to scream and break stuff until there’s nothing left in the world to break.

That brings me to today, as I sit here in a bathrobe trying listlessly to find answers as to where things went south and did so so fast.

Yesterday I checked myself in to the hospital for a psych evaluation. This was prompted by what feels like weeks of hardcore depression and what’s called “passive” suicidal thoughts. I haven’t had much of an appetite for weeks, I couldn’t control my emotions in terms of sadness, and I just want to sleep all of the time, to not be awake so I didn’t have to think. The guilt of what my cancer has done to those around me has become too much to bear — I can’t look at my daughter without bursting into tears, and the realization of how bad my marriage has been damaged is almost too much as well.

I also feel hopeless about my cancer, and further like my doctors have given up as well. We haven’t discussed treatment options since I was rushed to Nashville in January to interview for the CAR-T study there but I know the list and it’s a short one. So what’s really left, you know?  Just to fade away, ruining everyone’s life around me in the process (what it feels like). My daughter who can’t have a healthy normal daddy. My wife who’s dying for intimacy in a virtually loveless marriage.

At some point you just have to wonder what’s the point.

For the last five years I’ve managed, if you can call it that, my depression over my diagnosis. In reality this has consumed me, utterly. I’m not me anymore, just some cancerous automaton who can’t even figure out the motions, who wants so badly to just have a day or two of normalcy but has forgotten what that even looks like.

But I’ve maintained, even managed a smile at times. I try desperately thought failingly to maintain friendships. I work, mindlessly, to support my family since it’s all I feel useful doing. I just don’t think about the cancer thing as much as I can, which requires some serious effort at times. I mean you can’t rationalize this away, at least I don’t think so. I’ve got terminal cancer and there’s no miracle happening here for me, no last-minute save on the horizon that I can see. I’ll die as my numbers creep up and the cancer causes more things like the tumors I just had removed, and to a greater or lesser extent take everyone around me with me on the journey down the drain. At this point I don’t even seem like I’ll be busting the average life expectancy post-diagnosis of seven years, despite all of the advantages I’ve had (best medical care and insurance, caught early, etc.).

Anyhow, I’ve maintained for the most part until recently but something, or some drug change, in the last month has made this almost untenable. So yesterday my wife called the oncologist and they told me to come down for a pysch evaluation, which is a pretty scary deal. In the end I was offered three options: hospitalization in a psych facility, an intensive outpatient therapy option, or basically nothing. The thought of being hospitalized in a pysch facility frankly scares the shit out of me, nor do I think it’s necessary, so we chose option B. I’m just sitting here waiting for the call for this all to begin.

In the meantime I’ve been doing my own drug evaluation and ditched the Ambien last night — that’s the only thing that’s really changed in the last week and it’s not really working the way I wanted anyways. So far so good.  I’m emotional today, but after yesterday that’s to be expected. I feel a little lost, embarrassed, and although I’m forging ahead with it I’m dreading this phone call from the psych people.

It’s bad enough that Ariana’s daddy is dying, he doesn’t have to be crazy too.

I Was Ariana’s Daddy.

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

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

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

What is this book?

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

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

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

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

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

Not really the impact I was going for.

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

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

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

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

Worst.  Ever.

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

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

And it’s all I have.

I love you, Ari.

-Daddy, 2/2016

 

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.

Alpaca outta f%&king nowhere.

Now four years into this shitshow I’ve decided that the word “fatigue” is my least favorite side effect description.  Fatigue?  Fatigue is what you get when you’ve had too much sun at the Derby party.

“Oh Rhett, ah do declare that I’m a tad fatigued!  Can you find the negro for some more mint juleps whilst ah retire indoors?”

Sorry, that’s how I envision Derby parties: a bunch of white Southern-accented racists in stupid hats.  Your mileage may vary.

“Fatigue” is too dainty (another word I associate with Derby party-goers) a word, and it’s woefully inadequate in describing the narcolepsy-esque exhaustion I’ve had from either/both my disease and the various chemotherapies.  Which I bring up because since I started Dara, my hemoglobin is so low that I’ve had 4 transfusions in the last few months. In fact I’m typing this in on my phone (ugh) from an infusion room chair while waiting for some CBC results to see if I need another … I’ve been dead on my feet all week.

And on that note while dealing with the extreme pit of narcissism that is my mother on the phone I was just told my first blood samples, which they took again due to what they thought was a clot in the tubes, weren’t actually clotting in the tubes.  It was that there’s apparently so much protein in my blood it appeared to be clotted.

Sighville.

Bought the kiddo a stuffed animal from the gift shop while I waited for a hastily-scheduled transfusion appointment.  I know my wife thinks I spoil my daughter but there’s a purpose beyond just loving to give her stuffed animals — I think it helps when I’m delayed at appointments in the hospital or oncologist to bring her something fun to turn the experience positive.  My logic is simply that in doing so, I can hopefully erase any negative connotations for her right now with all of this.  She has been taught about death, and she knows I’m sick, but she hasn’t put the two together yet.

I just can’t go there with her quite yet — not only does she not have the maturity at 5 to really come to grips with this, I don’t think, but I had to soften it somehow since we obviously had to talk to her about it.  Between the constant doctor visits and people (irritatingly) talking about it in adult terms in front of her, it’s not like she didn’t know something was up but more importantly we were afraid she’d think I had something she could catch.  I’ll just take those tears for her in the meantime and she can have a stuffed animal instead of worrying daily that daddy won’t be coming home that day.

Speaking of tears, I’m not a giant fan of  trying to hide them in an infusion center so I’m out.  Have fun, hug the loved ones and thank you, whoever gave this, for donating the blood I needed today.  And I’m sorry for what I and some of Colorado’s finest medicinal plant life are going to do to said blood after the kiddo goes to sleep tonight when I try to relax and erase this goddamn day from my brain.

Oh but to end on a laugh, whenever something happens to me that’s a surprise (like this transfusion) my mind immediately goes to this, one of my all-time favorite memes.  Enjoy …

mekjol8

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.