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.

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.

Last day harvesting (hopefully)

So yesterday was pretty mellow.  Harvesting doesn’t hurt, you just lay there, and with a laptop and a good wifi connection that was fine.  Relaxing, really.  Unfortunately I needed 6 million stem cells and got 5.65 million, so I had to come back today for another session (and another Neupogen shot).  Only real bummer is now I won’t get these damned lines out of my neck until tomorrow at the earliest, although I’m hoping they can do it later today if the labs test my collection bag in time.

Here We Go …

My labs came back this morning and there’s enough stem cells in my peripheral blood to start harvesting, so a’ harvestin’ we shall go.

Sorry, I got a whole 3 hours of sleep last night between the lower back pain from the Neupogen and having the catheter lines and dressing on my neck.

Wish me luck … I’m scheduled for four days of this but as soon as I have enough cells they get rid of the catheter and the shots so hopefully I get to sleep again.

Update:  turns out I forgot to post this.  It’s 2:30 pm, and I’m feeling good, actually.  Just been kicking back all day in a hospital bed while the machine runs, and my nurse, Heather, is awesome.  She even got me a Starbucks!  I’m going to go above and beyond and do a few more hours on the machine than the requisite 5 in the hopes of getting done quicker — the minute we get all the cells needed for two transplants I can get this goddamn catheter out of my neck and stop with the Neupogen shots.

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Machine behind me there is the apheresis machine that pulls my blood out, separates out the stem cells, and then puts the blood back in.  You can’t really see it but I have two lines running into my neck on the far side that connect to the machine.

Sigh.

Sitting in the waiting room at the hospital to get my catheter line stuck in my neck. Already had labs done and my daily Neupogen shot … Had to double-up the Oxy last night just to get to sleep.  The pain is lower back and hips this morning — walking and feeling like an old man.

I know I made the right decisions about having Amy and Ariana here, but having to go to appointments like this next one without Amy’s hand to hold is kind of tough on the soul.  I don’t want Ari around here though and she can’t go to a lot of these anyhow.  Amy found an indoor play place for her this morning and while I’m lonely, it makes me happy to know she’s going to be somewhere giggling instead of in a waiting room.

And I may be able to parlay this into an In-N-Out stop on the way home.

Talked to my mother yesterday … I didn’t even get into it here but my parents were in a head-on 50 mph collision on 285 several days ago when a propane truck heading the opposite direction decided to turn right in front of them and then even more inexplicably stopped.  My dad fucked up his back but mom fractured both legs and will be hospitalized for quite a while.  Her surgery went well thankfully, but they’ve definitely got her on the good stuff drug wise.

Ouch.

So yeah, as forewarned was possible the Neupogen shots are causing severe pain in my upper legs and hips.  Thankfully Dr. M. prescribed me some just-in-case Oxycodone which has taken the edge off and got rid of the jaw pain, but legs are still driving me nuts.  Grrrrrr.

Get my catheter lines in my neck tomorrow morning.  Because what else could be more fun on a Thursday?

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Took this this morning on the way to get my shot.  This is the hospital in Phoenix where the majority of this stuff gets done to me.

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.