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:
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 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!
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!
Some more on my weight. When I started chemo, my official weight was I think 73.6 kg… around that. Now, 2 weeks in, I am at 77.8 kg.
The secret snake oil here is steroids.
As part of the treatment, I take Prednisolone, a synthetic glucocorticoid, whatever that means. Point is, it does several things:
It suppresses my immune system (as far as I understand) — reason for not having the B symptoms any more, and the primary reason I have to take it. (It’s how chemo works… explanation maybe another day.)
It doesn’t let me sleep; last night I had 3 hours of sleep. Before that, 5. Before that, 4. Before that, 3. Not much when you should be busy raising your WBC. Basically I wake up at around 3-3:30 like it’s 6:30, and can’t go back.
I don’t know if it’s a side effect of the ‘roids, or the sleep deprivation, but I now have a serious shake in my hands. Using the touchpad of the notebook in the morning, not so much.
It suppresses (as ‘roids do) inflammation. I might have something in my knee joint — I’ll know when I get down from the big P (which is next week, for a week).
And last, but not least, it spins up my metabolism like fuck.
(And it can have some other fun side effects too: depression, suicidal thoughts, mood swings, anxiety, hallucinations, memory loss, and I forgot the rest.)
So to put this in perspective, here is a typical menu of mine nowadays:
Starting with a tortilla (or regular) sandwich (ham, cheese, lots of mayo) immediately after waking up
breakfast around 9-10: maybe another sandwich or 2, or some cake if there is any
maybe another sandwich or cake before lunch around 11
lunch 1 with Marti (younger kid) at around 12; for today’s example, pasta, lots of it
lunch 2 around 1-2 pm
lunch 3 around 3 pm
some snacks (maybe cake…) around 4pm, maybe a carrot cake or apple pie combined with the beginning of my walk
some more snacks on the way back from my walk — on Wednesday for instance, this meant a half family portion of french fries with mayo; yesterday and today: a Nutridrink (300 kcal nutritional drink)
dinner at 6-7pm
dinner 2 at around 8-9
maybe some night snack (any cake left?), or another sandwich.
So, I don’t do much besides eating, and yes, I digest the whole thing. (No photo.) This results in getting 1-1.2 kilos up within a day easily. Not all days, as you can calculate, but still, nice figures.
My normal weight before falling ill was around 82-85 kilos. Reachable?