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.

Hmm.

Been a few weeks, but certainly some busy ones.

After the first month of Revlimid I had my monthly appointment with the local oncologist.  Although we didn’t know it at the time (took blood tests at that appointment), the Revlimid seemed to be working.  My igG went from 3,996 on April 28 to 2,628 on July 18.  My igA and igM are moving in the right direction as well, and my Kappa and Lambda light chain (free) numbers did too.  This has continued through August’s tests, although not as significant a drop in the igG.

BTW I couldn’t explain those numbers if I tried, save to say they are the 5-6 markers that the doctors track my disease with.

So good news?  It’s impossible for me to be optimistic.  Not that I don’t feel it, I just won’t admit it.  Nothing has really gone right with this disease for me in the last year, and every time I’ve even attempted to summon some hope life has beaten me so far fucking down I’m just not even going to bother.  It is what it is, I hope it continues, and at some point I hope I can reduce the Revlimid dosage.

I had a six-month skeletal survey as well this month and the results were good — no new lytic lesions and no progression on the one I have on my hip.  I was kind of worried about that because I’ve had some weird bone pains in the last few months and I was just waiting to find out my bones looked like Swiss cheese now, but no worries yet.

On to the less fun stuff — so after month 1 on the Revlimid, my CBC test showed that my white blood cell count was extremely low.  As a result the doctor wanted to put me on Neulasta, which helps with that.  As one shot is around $3,000 they had to get approval from my insurance company.  In the meantime I started up the Zometa infusions again (bone strength), which has always had some gnarly side effects.  The first dose is usually the worst, though, so when I got the flu-like symptoms the next day (a Saturday) I didn’t think much of it.

Then the cough started, and my temperature went to 102.  So I started up the Levaquin, per the doctor’s standing orders when I get a high fever.  For the next few days I felt like I was making progress and then that next Wednesday I fell off a cliff.  Zero energy, cough so bad it was bringing tears to my eyes.  We were afraid I might have pneumonia so off the hospital I went for eight hours of tests.  I actually was happy to be there, outside of the inconvenience to my family — they put me on oxygen and Dilaudid and it was the best I felt in a week.  Anyways, turns out I had a viral bronchitis, which took a few weeks to get rid of.

I’ve noticed that the Revlimid’s effects are cumulative, much like the Velcade was.  Towards the end of my last cycle I was really feeling the fatigue, badly, and what’s more the off week (I do 21 days on, 7 off) I felt noticeably better.  Kind of scared about this cycle.  I’m also scared that the rate of motion in my numbers on the next test is going to decrease like it did between month’s 1 and 2.  Because, really, what I needed was more stress in my life.

Mentally and emotionally this has been a bad month outside of my week off.  The time in the hospital and the sick days before it was difficult — feeling so helpless and bearing the full brunt of what it means to have a compromised immune system really drives home how sick you are when you have something like this.  Spent a lot of time on my back thinking about life, and death too.  One sick day before the hospital day (or perhaps after, my memory is going) I watched about 10 episodes of Chopped that I had DVR’ed.  I swear in every other one a contestant chef had a parent die early, usually with devastating impact.

I’m haunted, repeatedly, by visions of my daughter asking my wife “where’s daddy?”  It never goes away.

Long ride for only being a month.

Yeah I know it’s been a while.  Been a long month and not a particularly fun one.
I noticed right away that the Revlimid/Dex wasn’t as easy on my system, if a chemotherapy drug can be, as the Velcade/Cytoxin/Dex regimen was.  The fatigue hit me pretty hard, and the first week or so as my body adjusted to a new poison I had night sweats, headaches … nothing too too severe, but not really pleasant either.

The new regimen is 21 days on (1 pill a day) and 7 off.  Right towards the end of the first three weeks I got a stomach bug that knocked me on my ass for 3 days — zero energy, not a fun ride.  The next week, my week off Revlimid, I went in for my monthly checkup with the local oncologist and to start up the Zomeda infusions again (monthly bone-strengthener, nasty side effects).  At that meeting my CBC returned a super low white blood cell count, so they began the process of getting Neulasta, an expensive WBC production drug, approved through my insurance company.

The first time I had Zometa I ended up in the hospital a year ago.  Sure enough, my temperature shot up as the bone pain started over the weekend so I started the antibiotic I’m supposed to take as per instructions from my oncologist.  Flu-like syptoms start, temperature won’t go down and I feel flushed and miserable.  It seemed like things were improving towards mid-week, and then WHAM.  Fell off a cliff last Wednesday and ended up in the hospital.  Temperature was back up, cough was uncontrollable and so painful I thought I had pneumonia again, etc.  After 8 hours there and several tests they decided it was a viral bronchitis (which my daughter and wife then got), and by Friday things were stabilized, at least somewhat.  I still have a mild cough.

Got the Neulasta shot on Monday.  Feel flushed and uncomfortable, although none of the pain in my hips yet like I got when I took Neupogen before my stem cell harvest in February.  Headaches and weird jaw aches, though.  All in all not enjoying things, AT ALL.

The WBC scare drove home the fact that until further notice I’m done with scuba diving instruction and working at the Aquarium.  I just don’t have the immune system for either, and if Revlimid is going to be beating on my WBC (my oncologist’s opinion) to the point where I need to suplement WBC production, then I need to be extra careful.

I spent a lot of time miserable and on my back in the last several weeks thinking about things and trying to fight off a crushing amount of depression.  I have one realistic hope, and that’s that the Revlimid pounds this fucking disease down enough that I can lower some dosages and feel normal-ish, at least for a while.  But this monkey on my back just gets heavier, every day seemingly.  There’s no ignoring it, forgetting it.  I wake up and take drugs for it, I deal with the side effects all day, I take more drugs at night, and then, depending on the level of headache or other pain, i either take something to sleep or read myself to sleep with no covers because the regimens make me sweat like a pig all night.  Fun fun fun.

When I was sick in bed, my daughter was coming in daily and giving me hugs while exclaiming “poor daddy” in a way that while touching, broke my heart.  She has no idea her father has a terminal condition, and this is very likely as good as things are going to be.  Fuck she doesn’t even get that the cats are dead and asks where they are constantly, how the hell is she ever going to understand this?

I spent a day watching about 10 hours of DVR’ed Chopped I had stored up.  In almost every episode there was at least one chef who had a parent die at an early age.  Talk about not being able to escape through the magic of television.

Enough with the …

… shots in subcutaneous fat.  Seriously.  At least these weren’t in my stomach like the weekly chemotherapy shot of Velcade, but still.  Two full syringes of Neupogen in your arm is a shitty breakfast.


So we’ve been here a little over a week now.  I’ve had a bunch of meetings with planners, coordinators and doctors and had several tests done including an echocardiagram, an electrocardiagram, a full panoramic xray of my jaw, a full body skeletal survey (20ish xray shots), a host of lung tests, tons of labwork, etc.  Beyond making sure I’m healthy enough to do the transplant, a lot of these tests are to find a baseline so that if something goes south they have a “normal” to compare things to.

All of that was a precursor to this week, where I start getting Neupogen shots to increase stem cell production and pop them out of my bone marrow for collection starting later this week.

I linked the Neupogen website in that last paragraph just for humor’s sake.  Stock photos are one of those idiotic things in life I tend not to spend too much time on, but seriously — having spent almost half a year going to infusion centers I can sincerely tell you that NOBODY there has ever had that “Yay, chemotherapy!” face from the pictures on that website when I’ve been there.

So far things are OK, I guess.  Although expensive I believe I made the right decision to rent this villa for a few months.  It’s quiet here, and peaceful, and bright but not in an obnoxious way.  Ariana seems to have adjusted, although I think she’d be happy in a shack as long as I could pull up the Bubble Guppies on Amazon Prime Video.  The shopping is amazing in this area and everything’s very convenient.  The weather is great too — it’s been so long since I lived in California that I forget what it’s like when it’s just perfect every day, but you can see why people come to similar climates during the winter.

I finally got my In-N-Out burger too, a double double.  It was heavenly.  I bought a commemorative t-shirt to remind me of how good it was, in fact.  I forgot, however, half the secret menu stuff so I just ordered off the menu like a tourist.  Ah well.  I know that’s not exactly the first line item on the anti-cancer diet but my diet is super restrictive for 100 days after my transplant so I have to get in the bad stuff now.  That’s my excuse, anyways. And if people continue to bitch after that I can bust out the BUT I HAVE CANCER card.

A little uncomfortable guilt never hurts when an In-N-Out burger is being questioned by health Nazis.

Mentally and emotionally …  I’m OK.  I mean I’m freaked out, but as I’ve mentioned before here when you’re out of choices the mental state doesn’t really matter, does it?  I’m so young compared to everyone else here, and that’s been difficult.  One doctor, an ENT guy I saw Monday morning, even said the dreaded “you’re too young for this” line.  He was cool and we were having a good chat so I didn’t mind, but that constantly occurs to me here in the land of Where Wealthy White People Come to Die That Hate Florida.

I wonder what the elderly patients think, seeing me here.  I would imagine a mix of empathy and thankfulness (that they didn’t get myeloma sooner).  I feel empathy and jealousy (that I didn’t get myeloma much later), so that’s probably close.

People have been coming out of the woodwork in my life lately, and that’s been appreciated although difficult to deal with.  As an introvert who’s only regular public interaction was either protected by the anonymity of writing or the expertise of being a professional (diving, portfolio management) this is a new sensation and experience and not one I feel like I know how to handle.  Perhaps nobody does?  I’m sure there’s a whole barrel of monkey’s worth of discussion there about how this is deeply rooted in some inability of mine to deal with people caring about me or similar.

Weird, the things you come up with and/or realize when you are just typing your thoughts.

I’m waiting while Amy gets ready to go, procrastinating fighting Ariana to get her clothed while she watches some edutainment garbage called Super Why, to go to Over Easy North.  Found this place last week while trying to find a good place for breakfast and noticed it was on Triple D.  As much as I hate the host of that show I have to admit he showcases some rocking places to eat, and today, with this Neupogen flowing through my arm like an undesired reality, I feel the need for some serious fucking breakfast.