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.

bdeab-photo

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.