Mental Sewage.

Another day passes.

I was supposed to begin the second cycle of my current chemotherapy today (Cytoxin, Carfilzomib and Prednisone) but I’m so beat up that Dr. Matous is giving me a week off.  We’ll find out mid-week how effective the first cycle has been.

I’ve been withdrawn, well, really in a lot of ways since I got the bad news about my CAR T results from Nashville.  I hadn’t realized quite how much hope I had put into that whole deal until it came crashing down. I know I’ve harped on it here a few times but I keep coming back to it, the day hope died for me. Now I just feel like I’m a one-person time-bomb who can’t see the timer. Place your bets, kids, there’s plenty of squares left.

I set little goals for myself, morbid as they are. I had to live through a week ago because I closed on a refi that completely got my family out of debt, so there won’t be any hijinks when I’m gone. I have to live through the 5th of September because I redid my will and all of the trusts I just set up for my family need to be signed for. There’s more, a mental list, but I’ll be honest — they don’t go too far out. I feel too fragile for that and certainly that has played into a despair I can’t shake.

I’ve only slept well in the last month the last two nights thanks to taking 50mg of Benadryl  at night (with a Xanax chaser and a toke or two some nights). Probably not the smartest chemical diet but there’s this weird place you get when you’re terminal where safety just gets put aside. Seat belt? Laugh. The only reason I wear one anymore is because the beeping annoys the shit out of me. Mixing Opiods (Opiates? Whatever, screw your accuracy)  and Xanax and pot? Well, maybe one of them will knock me the fuck out so I can stop thinking and get 4 hours of sleep. Yes how terrible it would be if I didn’t wake up and cheated cancer of slowly eating me alive for another unspecified period. Or hell, just so I could GET to sleep and shut my goddamn brain off for 10 seconds.

SO I CAN STOP THINKING GOD DAMNIT.  CAN’T YOU UNDERSTAND?

My brain is my worst enemy. Sure the cancer’s killing me but my brain is running the Howard Cosell constantly (not with his accent, but you know what I mean). It’s ruined me, and really THAT is the battle with cancer that I’ve lost. I mean you get cancer and you’re fucked, we all know that. At some point you’re just going to lose, odds-wise. But what makes is truly miserable are those voices in your head. My personal favorite is the constantly-repeating image of my daughter screaming “I want my daddy!” after I’m gone. Over and over and over and OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER AND OVER … get the point yet?

I don’t know how to put that aside. Over five years of this disease slowly sapping away my life, my sanity, my personality. It’s not really how I wanted to be remembered, a shell of a human, but it seems like a one-track destination. I’m zombie’ing days away just trying to live another day.

And for what?

Well, for who, you know that Rich. But at what point do you become the albatross you used to write about? To everyone, to everything you know?

I feel like her defender lately, as if I suddenly understand her better. We’ve built this bond recently. Of course that can be a double-edged sword.  I asked my daughter last night why she told her mother she didn’t want to go for a walk with her and she told me “because mommy didn’t break her spine, or spend all that time in the hospital, and I didn’t want you to be lonely.”

If she saw the tears she didn’t say anything. I’m so glad I got cancer so I could have moments like that with my child.

Anyhow her mother is frustrated with her and a little short-tempered lately. Ariana is in a “phase” I guess. That’s one of the other fun problems with cancer the pamphlets don’t tell you about, kids. See our daughter’s therapist believes some of her acting out comes from my illness. So I get to see, firsthand, how I’m fucking my own kid up. I can’t tell you how awesome that is. Even though I know some of it is in fact just a phase.

But she and I are closer lately, anyways. Mostly because  I sneak her Blow Pops that I order on Amazon and hide in my desk. What the hell do I care? At least she can remember a daddy that broke the rules when her mother was gone to share a sucker with, I guess. I’m fighting for the inches now, praying she’ll remember this or that, or not this or that as the case may be. It figures that the exhaustion from the drugs and disease is so strong, so that I can’t even fully  enjoy these last moments. Not with dad, the gimp. He can’t feel his feet anymore or get out of bed half the time. Quite the epitaph.

Ironically my weight is at a nice spot now, although between the fact that I shave my head and the gaunt look to my face lately I feel like a double in Schindler’s List. I just don’t feel hungry anymore, except for the frozen fruit I take to bed at night as a snack. It scares me sometimes because I know I can’t heal without sustenance, but I just don’t want anything. Hell I’m taking a Zofran a day right now just to combat nausea, the last thing I want to do is eat.

So none of my clothes fit and I look like an idiot now. *thumbs up* I can’t even wear stuff I wore on my honeymoon without a belt, which is impressive (and shows you how often I throw shit away, since those haven’t fit, since, well, the honeymoon). On the bright side I can take my pants off without unbuttoning them. On the not-so-bright side if I don’t cinch my belt tight enough they do that when I’m walking into my office building.

Maybe I’m just pissed because I’ll be dead before Cyberpunk 2077 comes out. You never know with me.

Strange.

I’m still waiting to hear from Dr. Berdeja and the folks at Sarah Cannon about my initial results. It’s tiring, emotionally. Further, since the procedure I’ve had some serious new pain in my shoulders, hips and calves that the painkillers I have aren’t making a dent in and is proving to be poor company to the scanxiety scratching and snarling at the door.

I talked to Megan the Wonder-PA about this and she suggested, after we tested various motions, that it was muscular. Which is possible, although I have been walking a ton lately (for me) with the family and by now I would have expected the muscles to start responding.  It’s probably time to make good on my promise to “someday” try yoga.

Our dog, Trixie, has the right idea on our walks. You’ll be walking and suddenly stopped involuntarily to look back and see she’s laying in the grass in the shade. Just like me for 47+ years I’m pretty sure she’s thinking the same thing I am: “fuck this shit.”

But, it’s important, and I’ve never done stuff like this. Plus it’s family time, something new to do after dinner besides just flipping on the brainrot box.

There’s something off with my eyesight too … I read every night with my trusty Kindle PaperWhite and for the last several months at a certain distance I get double-vision unless I close one eye. Either one. Bizarre.

If you don’t mind a quick digression, I figured out a new item on my bucket list. If this clinical trial really is successful like it has been for some (complete remissions), I want this port removed from my chest. It doesn’t bother me in a pain sense or anything, but every time I touch it it freaks me out and reminds me that I have cancer. I’m already GMO, which is troubling when you really stop and think about it; let’s take the spigot out of my chest though, k?

I *think* I have things balanced with the family again, but then again I’ve thought that so many times in my life I’ve lost count. The whole thing is hurtful, and shameful, and about 1,001 other descriptive terms that almost but never quite capture it all. For example their constant bashing of my wife and doing things I’ve told them are putting my marriage at risk (sending her shitty emails, texts, badmouthing her, etc.) while I’m trying desperately to fix it. And then they push me to get divorced.

I mean there’s a genius idea. So the terminal cancer patient is supposed to get rid of the only person he even has a remote chance of romantic love with thanks to this disease (and I do try to be hopeful about that because that’s what Dex took from us), someone who cared enough to be my caregiver for the last five years through the horrors the Dex put us through even while she HATED me, truly hated me.  So get rid of any hope of intimacy now that I finally am starting to understand relationships, myself and how to treat people with kindness and love, and my caregiver.  Hell I can’t even get my socks on in the morning most days due to the pain without her help.

Oh and as an added bonus, I can lose half of whatever time I have left with my daughter, the ONLY thing that matters to me on this planet and the only reason I’m still here. I would lose my house, my baby’s house. Where she learned to ride a bike, and we laughed and cried together and she walked to school everyday with her mother.

But no, it’s their way or the highway. I seriously should have been a police negotiator or similar. Somehow I end up in the middle of everyone elses’ problems which I then have to clean up OR ELSE. Fucking family businesses.

Yes, I can leave. However I’d be giving up a salary large enough to allow my wife not to work and raise our daughter while she studies to become a nurse (she just got into a very prestigious nursing program here), true “Cadillac” insurance which when you are running up a million a year or so is somewhat important, including for your daughter (Ari was born with a cleft lip and palate).  And instead of spending whatever time I have left just trying to build some memories with my daughter and see if I can fix this broken disaster of a marriage (and my family too, because I thought it would be nice to see if I could break through 47 years of bullshit and make a real attempt at having one), I’d spend it trying to find a job that is going to be OK with me taking off for five weeks at a time to do stuff like this clinical trial I just did?  Or to doctor’s appointments every week? Not happening.

Here I eat shit, but at least I don’t have to worry about the serious stuff. I wish I felt like I had another option but the stress of cancer is enough  — I’ve been at my limit for so long I barely remember what it feels like to not take an anti-anxiety drug and to just feel relaxed.  The way I felt scuba diving, basically. Stress-free, just floating, no phones or email or toxic people incapable of empathy. I think that’s why I like being a night-owl so much. I can pop my medicine, grab a glass of frozen fruit (my nighttime snack) and my Kindle, and just lay down (the only position that doesn’t hurt) and read, clear my mind of all the crap. Unfortunately there’s always another day coming and lately, thanks to the clinical trial, all the travel, the family drama, etc., they’ve been tough.  I’m still here fighting, but they’ve been tough.

But it’s cleared up for another day, at least.  The family drama, that is.  Congratulations, Rich, here’s another bottle of Xanax.

Marsha Marsha Marsha!

Man I feel like I got hit by a truck this week.  No idea what in the hell is going on but it’s like side-effect-palooza around here.  In no particular order:

  • Heart/chest pain.  This is the scary one to me.  I can’t tell if I’m having heart pain or some seriously Satanic heartburn.  It’s right at the top of my chest underneath my breastbone, hurts like the Devil for 5-10 minutes, and sometimes I can banish it with drinking cold water (sometimes not).  When I was on Velcade back in the day I used to have to take Prilosec to combat some side effects so I started taking that again, but I’m not 100% it’s a GI thing.  Will talk to my doctor Friday, although I’m pretty sure that means it’s time to break out the EKG machine.  Which I don’t mind, but the nurses at CBCI hate the combination of my chest hair and the not-really-sticky-whatsoever EKG pads.  Not quite as much as I do when they RIP THEM OFF LIKE A CHRISTMAS PRESENT.  Actually they’re pretty good about that stuff, I just thought that was a funny image.
  • Body pain.  I’m thinking this is Xanax-related.  I had my sleep schedule pretty dialed in during the last few chemos but every time I start a new one, as some of you well know, it’s time to figure it all out again.  I haven’t been able to sleep like I used to with past chemotherapies on this Dara cocktail so I started popping a Xanax on really bad nights again (I think this new steroid is really messing with my sleep), but then I wake up and my ENTIRE body hurts.  It gets worse through the day.
  • Other random things — minor neuropathy in my calves, exhaustion, temperature.  I may just be coming down with something too.  I’ve noticed I’m so much more aware of my body after four years of chemotherapy and everything else that I can usually point to something and say “yeah, think I’m run down because I’m fighting something off and my system is just taxed” or the like.  Either way something is beating the hell out of my immune system as can be seen from the CBC results.  At this point I’m curious if they’ll do my infusion Friday, which opens up a whole new can of worms — I missed a bunch of the clinical trial doses of my last regimen due to having pneumonia FOUR TIMES during it and obviously that’s not a positive (and also why I’m now on monthly IViG).  I’d really rather stay on the chemo drugs and try to get this goddamn cancer beaten back a bit than be sick.

I went to bed a few hours earlier than normal last night and proceeded to wake up all night long, sweaty and confused as to what was waking me up.  Like 10+ times.  THAT is what the Xanax used to stop, but I refused to take any last night to give myself a break.  Thankfully I’m heading home in a few hours for the day to hang with the kiddo while my wife gets some stuff done, because the thought of sitting here for another seven hours seems like a Herculean task today.

An interesting thing about Xanax (besides the fact that some dumbasses actually use the stuff recreationally) is that you can build a tolerance.  I used to take 0.5’s but noticed they weren’t helping this time around so I asked for 1.0’s.  The 0.5 aren’t working for beans, and the 1.0’s give me a hangover worse than my worst next-day in college.  Except for that one tequila “why is this pebble embedded in my nose night” from undergrad in SoCal, but that’s another story.

As a cancer victim, you (well me, but others I’ve talked to about this agree), are constantly scanning and analyzing every new pain, twitch, bump, skin aberration, spasm, sleepless night, thought, etc.  Is it a new cancer?  A new side-effect?  My cancer doing something?  The drugs working hard (I know this is a myth but I’ll admit sometimes I hope this is the case still) or not working at all?  Am I sick again?  Etc. etc.  I get a lot of lower back pain and I’m always worried, due to having Myeloma and knowing folks who have had vertebrae implode due to the osteoporosis Myeloma can cause, that I’m always one “picking up something heavy” from having my back shatter.  Especially since the only PET scan I ever did showed my lower back as a highlighted spot (and my hip and a couple of other spots where there were bone lesions from this).

Anyhow nothing too philosophical today, just an update since this has consumed most of my thoughts lately.  And don’t get me wrong, I’m actually doing pretty well mood-wise still (feel like I have to keep assuring that), just feel like hell.

Imagine that, cancer sucks.  Someone call the New York Times!

Oh and bonus points if you know what the title of this entry is from.  It’s not a contest, just a generational thing at this point.

A reality check.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Try living with that thought for a day.

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

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

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

Hi.

It’s been a while, hasn’t it?  I suppose that’s pretty rude of me — when you have a blog about having a terminal disease, vanishing for two months isn’t exactly “nice” to people who get news about you from it.  So sorry, for what it’s worth.  I know anyone I actually know personally that reads this, however, can (and does) text or call to get updates if I’m gone from here too long.

The news hasn’t been good which is the primary reason I haven’t written.  I’ve certainly thought about it a lot these past few months, but this is painful to me — understand that most of the time I keep composed about all of this by doing my utmost NOT to think about it.  I can’t do that when I write, however — it just all comes streaming out and most of this cancer-related stuff is really hard on me, emotionally, to keep going over and over.  But I will try to keep this updated more.

To make a long story as short as possible, I was doing pretty good mentally and emotionally and then I got my 60-day results.  They indicated that the stem cell transplant hadn’t been very effective.  That subsequently sent me spiraling into depression but I still tried to keep my spirits up, telling myself that Dr. M. at the Mayo Clinic had said the 100-day results were really the ones to pay attention to.


Unfortunately, the 100-day results, as I found out the first week of June, weren’t anything to cheer about either.

So, best case scenario at the 100-day was that my bone marrow biopsy indicated I was in remission and I wouldn’t have to do any maintenance chemotherapy.  Next best would be having to do maintenance chemotherapy, which is a low-dose chemo designed to, well, “maintain” things.  Then there’s me — I get to start a full chemotherapy regimen, this time with Revlimid and Dexamethasone.

My wife was NOT excited about the dex.  Apparently I roid-rage pretty badly on it.

Since then I’ve just been trying to keep my head up, you know?  I was in a bad, BAD funk after the 100-day visit.  My doc tried to be somewhat reassuring, but even he admitted this was not what he had hoped for.  He described my disease as “stubborn.”

But all I could think about was my daughter back home.

Here’s the thing, and I guess I’ve written about this before.  I don’t care if I die, really.  I’m certainly afraid of the concept, as much as I can get my head around it (can anyone?).  But it’s not like I would be leaving a personal life unfulfilled … EXCEPT for where my daughter’s concerned.  I don’t have a big bucket list of things that are all that important at the end of the day; most of my bucket list, in the end, is pretty frivolous (dive trip destinations,etc.).  I’ve made great money, and provided for my family financially and with a home.  So I boil it all down and all that is left, with all due respect to my wife, whom I love, is my daughter.  She’s all that makes me smile anymore.  And now here we are again, with me wondering whether I’ll make it to her being a teenager.

I think I’ve written about this before, but the hardest part, in some ways, is the perspective I’m forced into with this.  Take Sunday, for example.  My daughter (with help from mommy) woke me up with hugs, kisses and “I love you’s.”  I’ll never forget that.  Ever.  She, on the other hand, will probably not remember it very long since kids tend to forget everything before age 5.  So the things that are so important to me she won’t even remember.  What will she get to remember?  My last years, when she’s still in single digits?  I’m tormented, haunted by this on a daily basis.  Almost as bad is that I’ve realized there really is nobody who knows me well enough to let her know, later in her life, who I was.  I try, with the letters I’ve been writing her and storing in the lockbox, but that’s not enough.  Who’s going to tell her that I may have failed a lot but I always tried to do the right thing?  About how much I loved diving, or video games, or Iron Maiden?  Who’s going to teach her to ride a bike, or how to play poker well, or how a love of reading will serve her so well?  Who’ll be there for her prom night, or teach her how to drive?  To give her a hug or hold her hand when it’s needed?

The problem with multiple myeloma, especially when it’s being “stubborn,” is statistically the answer to all of those questions is “not me.”  And for some of them the answer’s nobody, and that hurts a lot as well.  It would have been nice if at least she knew who I was.

I know I’m putting myself into the grave with that last paragraph, but that’s the pragmatist coming out.  This is the stuff that keeps me awake at night, every night.

I can discuss my disease with just about anyone without getting too upset — but mention my daughter and I start tearing up, instantly, uncontrollably.  I just can’t handle it.  I take Xanax nightly to keep from waking up at 3 am dreaming about my daughter crying and asking my wife where daddy is after I’m dead.  She asks me every morning where I’m going, and when I tell her “work” she sounds so sad and disappointed when she asks me to stay and play with her and I can’t.  There’s 1,001 more examples I could give, but in the end it’s like none of this is real except where she is concerned.  I still don’t feel sick at all, and as far as I can tell I don’t have any symptoms — had some odd bone pains here or there, but nothing I would be inclined to attribute to more than a bump or spending 5 hours in front of the computer with my forearm in a weird position.  But I’m assured, test after test, that I am in fact dying.

I think about that a lot — I would have no idea, as far as symptoms are concerned, that I actually have terminal cancer right now.  They keep telling me I do, though, and then my heart breaks again for that little kiddo.  I mean fuck me, right?  But she doesn’t deserve this.  She eats well, and she’s polite.  She’s so kind and has been through so much with her cleft palate already.  Why does she deserve to have her father die?

Enough.   I can’t be doing this at work right now.

I got the call today about my Revlimid prescription and I’ll probably be starting it within 3 days now that insurance has OK’ed it ($8,000 a month).  I get to take a host of other stuff with it as well — the dex, as mentioned, baby aspirin to keep from getting blood clots, the anti-viral stuff, an anti-biotic … add those to the LexaPro (which, sadly, I had hoped to get off if I didn’t need maintenance chemo) and the Xanax to sleep and I’m a walking pharma-dumpster.  Joygasm.

I’ll try to update more often.  Hug the people you love, you’d be surprised how fragile and fleeting life really is.

A Day of rest.

Had nothing scheduled today as we’re at -1 and counting.  They use that scale here if I hadn’t mentioned it … -2 for chemo day, day 0 for the transplant, etc.  Amy said she’d get me a few Gigi’s cupcakes to celebrate my “new” birthday tomorrow.

A nothing day here still consists of tests, vitals every 4 hours, and several drugs taken prophylactically (sp?) for nausea, viruses and bacteria.  I’m also hooked up to a constant IV so I have to pee constantly — I’m sure there’s some value to that but with all of the other information I’ve had to absorb it’s simply slipped my mind.

Had a phone session with the therapist back home today.  She emails me to check in quite a bit, which is nice.  Our session went fine and was only half the allotted time — quite frankly I’m not really that upset or torn up about any of this.  I’d attribute most of that to the LexaPro, a bit of whitewashing from the staff here (not in a malicious or misleading way, they just tend to focus on the best possible outcomes for obvious reasons) and the fact that this is all so fucking surreal.


I mean I’m sitting here at the Mayo Clinic getting a stem cell transplant.  It’s easy to forget that sitting here, if that makes sense.  It’s funny because I’ve spent most of my life training myself, inadvertently, to deal with tough times by tuning them out with something entertaining — a video game, a movie, playing with the cats, playing with Ariana, whatever.  So I sit here, doing stuff like that, and manage to forget the seriousness of it all.  Maybe it’s just too much to deal with in a realistic way, too, and so my mind has just snapped into a defense mechanism where I refuse to “properly” attribute the correct level of seriousness to all of this.

Or perhaps I’ve simply cried all of the scared, horrified tears, played out the scenarios so many times they are now broken records, and realize there’s really nothing I can do.  This will play out like it plays out, period, end quotations, next paragraph.

But yeah, it’s more than just a little crazy, and a hell of lot too real to rationalize on almost any level.  It just … is.  I hope this is a step on the path I began when I first found out about this and realized I needed to mentally get to that place of “yeah, fuck this cancer, I’m kicking it’s ass!”  I’ve moved along a continuum from hopelessness, desperation and fear to resigned … indifference?  That word doesn’t seem right though.  Just resigned, I guess.

The chaplain came by today, a wonderful woman.  Being agnostic/atheist I hadn’t requested the services of one but I enjoyed talking to her, as did Amy (who showed up while she and I were talking).  She said she rarely tells patients this but she’s a Unitarian universalist, something I was totally unfamiliar with but I will be researching more about.  She said they welcome everyone, including atheists, and that it’s more about morality and ethics than some dogmatic faith in seemingly capricious deities.  They welcome any religion, and the more she spoke the more  I enjoyed talking to her and found the concepts interesting.

One of the things that’s been hard about this whole process is how many people have said they were praying for me, and had groups praying for me, etc.  I don’t really know how to respond to that.  It’s just such a nice, selfless gesture, you know?  Even if I don’t understand or can’t feel the religious belief they have I can’t adequately state how much I appreciate the gesture.  Hell some positive energy never hurts, even if I don’t agree with the conduit.

I wish I did.  I was listening to a podcast from atheist author Sam Harris months ago and he noted that the major problem with atheism is you have no mechanisms to deal with death and suffering.  I.e., were I a good Catholic, whatever that really is, I could seek solace in the fact that this is all God’s plan, that it’s not for us to understand or question but just to have faith, and I’d know I’d be going to a better place.

As an atheist you’re just there going “well, um, fuck.”

I tried.  I was raised a Roman Catholic but it never jibed with me, and as I got older and more intelligent and began researching the history of religions to find one that spoke to me I became more and more jaded by it all.  I’ve got books on finding God, and have the best translation of the Quaran I could find on my Kindle (not a fun read BTW).  I’ve read about Buddhism, and once let some Mormon kids talk to me in my apartment (while I drank a beer and had a few smokes, not realizing that was the roller-coaster drop straight to Hell in magic underwear land).  I feel like finding God, or at least some organized spirituality to learn more from, has been a distant hobby most of my life; one of those things you occasionally find in the closet and decide to focus on for a bit like a model airplane or a broken radio you swore you’d fix.  I’ve done that since high school really, when I came to appreciate the inner peace spiritual people seemed to exude.

I studied the bible as literature in college, and for the first time as an adult really read the thing.  Multiple times.  And try as I might I could not get past the story of Job.  That may seem strange to people, especially religious ones, but of all of the stories in the bible the one thing that I can point to as why I cannot follow any organized religion is that story and what it really is saying.

But if that wasn’t enough, next I met fundamentalists, and well, yeah.  Bzzzt.  It’s ironic because just two nights ago Amy and I were at the Villa doing a puzzle and Netflixed a movie called “Revisionaries” about the Texas School Board hearings regarding science text books.  Although fascinating, what blew me away was one of the main figures in the mid-2000’s on that board was a “Young Earth Creationalist” — someone who not only doesn’t believe in evolution but believes the Earth is 6,000 years old.

6,000.

No really.  6,000.

In a position of responsibility to decide what children learn as SCIENCE.

As a parent that is on the short list of things that terrify me along with accidents, boys, hard drugs and the Internet.

So when I say I don’t expect much from talking religion with people, understand where I come from.  Needless to say I wasn’t expecting much when this chaplain walked in the door today but after asking me some questions and hearing my answers regarding spirituality but never being able to find a religion that rang true to me, she didn’t so much give me a sales pitch but just explained what she was about.  So I liked her message and agreed to meet with her tomorrow and let her say a blessing over my stem cells because it’s not going to be about a God but about friendship and love and positive energy, and I think that’s a good thing.  As part of the ceremony she is going to read a Buddhist story, which I think is pretty cool too.

Definitely not what I was expecting of a chaplain here, but this place continues to surprise me.  Everyone is so professional and exudes quality but is friendly at the same time.  It breeds a confidence that I’m in good hands, and that’s really the most important thing.  I’ve experienced some scary health care in my life, even with this cancer diagnosis from excellent doctors, so being able to just relax those anxieties a bit is really valuable to me.

Let’s see, what else.  Couldn’t sleep well last night — when you know someone’s going to wake you up every four hours it adds an odd level of stress to trying to get to sleep when you know you need rest but you aren’t tired.  Plus I’m tethered to this damned IV tower.  Xanax to the rescue.  Not like I needed energy to sit on my ass all day playing SWTOR and watching Ender’s Game over dinner anyhow.

The food here is decent — I had the world’s smallest french dip tonight, but the salad was good.  And my last one for a while — my dietary restrictions post-transplant preclude most vegetables and other things that are at risk of carrying bacteria (washing/cooking deficiencies) as well as eating out.  The chemo hasn’t hit me yet and I feel great today though.  It takes 3-4 days, apparently, but Amy said I looked good today and had good color, so that’s a plus.  Ariana seemed more comfortable on Skype with me as well and said she loved me, which broke my heart.  I shaved my goatee mostly off so the transition to having no hair won’t be as strange for her — honestly out of all of this coming up my biggest concern is not messing with her too badly since she’s too young to understand it.  Thank God Jeff and Amy are here and we have the Villa through March … like I told Amy today, knowing they are all there and Ari’s well taken care of and Amy is relaxing makes being here in the hospital a lot easier for me.

Although if Ariana turns to mommy while we’re Skyping and asks her to change the channel to Curious George again I’m going to get offended, heh.

Stolen naps.

Ariana has skipped her naps for the past two days.  I, on the other hand, have taken one for the past two afternoons.  I think it’s partially due to the Neupogen leaving my system and partially due to increased activity — we’re doing a lot more lately to maximize my fun time with Ari, so the last several days have been a whirlwind of eating out, going to the zoo, going to one of those bounce houses with wall-to-wall trampolines, etc.

Nothing much new on the doctor front.  We met with Dr. M. for a final pre-admission office visit on Tuesday.  He reiterated that everything looks good, called me an overachiever for collecting enough cells for three transplants, and walked us through the tour de suck (my phrase) of how I’ll be feeling in the hospital and when.  Apparently 8-11 days post transplant are when it’s going to feel the worst.  I’d have to check my schedule but given my luck in the last year that’s probably when I told most people to visit.

On the bright side he lightened up on the “how it will be post-transplant” speech and said I should be fine, just avoid sick people and buffets.

I’m scheduled to get a PICC line in my arm (maybe they always go there, no idea) on Friday, and then I’m admitted to the hospital Monday.  Crazy, and kind of scary.

Missing Mischief and Trouble a lot lately.  It feels so odd, not having cats, and hits me at weird times.  I must be dreaming about them or something because I tend to feel the worst about it when I first wake up.  I’ve lost a few cats over my life but have never felt like this before; I mean I’ve always been crushed, but this sense of loss is truly overwhelming and it’s been a while now.  I have a digital picture frame that I loaded with photos of Amy and Ariana and one of me and Mischief at the hospital before he was euthanized, and it breaks me down every time it flicks across the screen.  I think I see him curled up on the bed for a moment one afternoon, but it’s just my black fleece.  I keep expecting to find him in my laundry basket, or to come running when I open something that crinkles or has a noisy lid.

I had hoped that being in a new surrounding like this, instead of being at home, would alleviate this to some degree but it isn’t.  On the bright side Dr. M. prescribed me some Xanax to help me sleep through the night again (stopped doing that in the last week) so at least I have another pill to combat it.