Blood is in the air, and other stories of the rest week.

Okay so I went for a routine checkup on Wednesday, all is fine, WBC is up in the skies (my bone marrow got a pat on the head for “reacting so well to stimulation” — well that’s one way to put it), but turns out my anemia got slightly worse (meaning my red blood cell or RBC count went further down, meaning my blood’s oxygen transferring capabilities were lacking). This is funny though: I’ve had anemia since pretty much the beginning of the whole thing, yet, when my treatments started, I could restart my excercises (the walks), and did a lot of things, as I mentioned earlier. So if I am this active while anemic, what would I do with a normal RBC count? (Oh by the way, for the bone pain slash WBC stimulation issue, next time I only have to inject G-CSF 5 times instead of 6, so hopefully the bone pain will be lighter.)

Anyway, by now I too, was feeling my anemia: my heart was beating like a jungle drum (roko-tokotoko-koroko-tokotontonn), I had a headache… long story short, I went in for some bloooed on Friday. I got (I think) 0.6 l (3 packages) of compressed blood (I guess just the good stuff, ie. RBCs).

As a result, I am totally fine now: all the *BC counts are normal or (in case of WEBC) higher than necessary, we had a day trip to Muiderslot today (some photos here) and Márti’s (younger daughter) 3rd birthday party yesterday where I participated fully (yay!), and in general I feel energetic.

Then, this also happened this week:

I don’t mind, truly, and for multiple reasons: first, for the past couple of years I usually zeroed my hair for the summer anyway, it’s very convenient if you do sports (with sweating and all) and I think it simply looks cool. (Yes, I do think I look cool in the summer. Isn’t that cool?) Second, I think now I can ask people (friends, strangers, the leaders of the world) for small favors, like…


One million dollars.

Walks around IJburg.

Juli tells me (rightfully so) that I always focus on technical details on this blog and that might suggest I am doing nothing besides getting IV and other treatments.

Well, apart from some stupid side effects, there is a lot of time to live more or less normally. Within a 3 week cycle, I am spending 4 days getting actual IV treatment — and in cycle 1, side effects (like nausea, etc.) were quite light, leaving a lot of time to do other things. I sense that it’s more about these strange side effects popping up without announcing first, which can make it hard to plan ahead. But other than that, I can say I have time to do things on my own.

Also (and I probably repeat myself now): compared to having 40 degree fever for 2 months (which I did) and basically not being able to do anything other than laying in bed, so compared to this having a couple of slow days, even painful days is an improvement: I can play with the kids, get stuff done around the house (and finally closing my ties to the Hungarian state), I can watch Sopranos if I so please.

And of course there is a lot of rest, but I also walk every day. 2 km is the minimum, 5 km is the max so far. If you follow me on Instagram you can see some of the pictures (in 1:1 aspect ratio) I take, but for now here is a gallery of a lot more. Call me a geek, I love the geometric nature of IJburg!

Bonus: IJburg Photosphere (or Views, or what it’s caled now) here.

We also did a trip to Zaanse Schans, another 2 km for me:

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!