Out of the rabbit hole.

Bone pain. It’s not fun. I had it for around 3 days, of which 2 was truly horrible. (It got better first, just to attack with full power Monday evening.) You can’t really do anything with it (apart from futile attempts at “taking the edges off” with Paracetamol — which doesn’t really work here), and being a full body thing (at least for me: upper leg, pelvis, sternum, ribs, scapula, shoulders, and upper arms), it’s very hard to ignore… or to do anything while it’s on, for that matter. I am very proud of myself to actually get my shit together and still go for my daily 2 km. If you saw a guy walking around IJburg like this:


…well that was probably me.


The pain evaporated around 3-4 PM yesterday. It was truly very sudden, which made it very strange, like someone had turned a “pain switch”. Not that I’m complaining… With the pain witch off, the same someone turned on the fever switch, so now I have fever, we’ll see why today (I have a blood check appointment), and if it impacts anything.

I also slept through most of yesterday, so I guess “rest week” might really mean “rest”, as in “I don’t do anything but sleep”.

Weight status: 78.0 kg. This is the low end of my healthy weight range, and it will surely improve further, so: happy face!

Still on G-CSF.

Still with the G-CSF pain, but much more manageable. Basically it hurts without pain killers the same as with pain killers yesterday. More importantly, I’ve read up on other people on the intertubes and now reevaluate my pain levels in the light of others who have it much worse, like trying morphine worse or sitting in the hot tub for hours worse. I can easily sit on my couch, organising photos, or, well, read up on others.

So people, reading internet forums sometimes helps!


Truly shitty day today.

Probably a bit of GCSF overdose (you know, this is the drug to raise white blood count levels), resulting in a full body bone pain experience starting around 5am, and not really going away since (although reduced to arms and legs). I imagine going cold turkey on heroin feels something similar. This also means I can stop doing the injections, by the way.
I still managed to squeeze in a 2km walk, which makes me very proud about myself (to even shower…), and of course the walk was very good, perfect weather by the IJ. And I truly believe this helps circulate some of the excess GCSF out and reduce the symptoms.
So all in all, the “hangover week” has been squeezed into a day apparently. From tomorrow it’s “rest week”, and preparation for cycle 2!

Oh, and weight update: 78.3 kg, meaning I gained back 5 kilos since the start of the treatment – w00t!

Cycle 1, day 9 status: IV rounds complete for this cycle.

Yesterday I received my Day 8 IV coctail (Vincristine and Bleomycine), next up is 2 weeks without IV, I only have to take my (industrial amount of) meds. Let’s see the immediate aftermath:

  • Due to the (I think) Bleomycine I spent 2 hours in the night coughing-and-not-sleeping. This impacted my day somewhat, in that I am now missing that 2 hours of sleep, and want to fall asleep instead of eating my dinner.
  • I also had to start to administer subcutaneous G-CSF yesterday, which in normal speech means I inject myself (ugh) with the equivalent of that extra size red healing potion in Diablo that you can only buy, not find in the dungeon, cos’ it’s so big. What it does is it tells your bones to start generating white blood cells (WBC, for an added TLA), at once. Result: yesterday I had no white blood cells (normal for this kind of treatment), today I probably have them swarming (no sign of it on Foursquare yet), and this will continue until Wednesday next week, probably resulting in WBC figures 5 times the normal — but that’s a good thing.
  • Added WBC side effect: I spent 2 hours laying in bed in pain this morning. Generating large amounts of white blood cells in a short time means your bones (mostly: ribs, scapula, and shoulders) hurt. A lot, apparently. Hard to explain the sensation, I guess it’s somewhere between your spine wanting to leave your body and start a new life in Florida (in FLORIDA!), and receiving a waterboarding lesson (maybe also in Florida). Reportedly Paracetamol helps, haven’t tried it yet, we’ll see.
  • I’ve also had some mouth problems (scarring because of some fungus, sorry for the naturalistic details) since around Saturday — again, part of the game, they give you (yet another) medication for it. I’m not too bothered by it yet (doesn’t hurt), but wouldn’t be good to have my otherwise awesome appetite impacted by something like this.

On the positive front:

  • I have no nausea at all, I can eat well, etc., meaning I have high hopes for the coming 2 weeks to walk, maybe start running, recover, draw, meditate, write.
  • My back pain was mostly gone by noon and I could do a 2.5 km power walk in the afternoon. Added benefit: got myself a good apple pie from Vinny’s for the walk. Added benefit of this: I avoided the rain that poured for like 5 minutes while I ate the pie.
  • I am currently weighing in around 77 kg, which is mostly due to last week’s binge eating, and then losing some yesterday (I guess; I always lose weight on hospital days, stress and whatnot). Target could be to hit 80 kg by the official end of this chemo cycle (May 31st). Seems absolutely doable!