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 Zomeda 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.