The stuff I eat and other disgusting details.

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?

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!

Rest days, walks around IJburg.



After the first 3 days, there are 4 days of rest before the next IV next Monday. Rest means you don’t get IV but still have to take meds at home: one type of chemo med, antibiotics, a med to reduce the negative effects of antibiotics, antivirals, and Prednisolon, the IDDQD med you know.

For me this means starting to move again: I walked. I am doing 3 km now (more precisely: I did 2.97 km yesterday), and it feels very good, despite the slight ache I have in my throat. (Maybe the wind.) But walking in the sunshine, looking at the IJ, the ships and stuff… I always loved this.

On another note, today is the first morning without any B symptopms: sweats are gone now too (they haven’t been strong for the last couple of days, but they were still here), so I am at the 4th day without fever, and 1st day without sweats. Happy face!

Also, apparently the appetite is back. After Mon-Tue-Wed I was down to around 73.7 kg, now I’m back to over 75. Yesterday I was eating like there is no tomorrow, pretty much continuously. Sammo for brekkie, then some cookies, then another sammo, then a huge piece of salmon for lunch, some lemon cake for after lunch, another sammo with sweet chili sauce and goat cheese, some more cakes, some more sammo… all the way till around midnight. Watching around 3 episodes of The Sopranos helps of you need to eat!

And now, for some Djoghurt.



Day 4 status.


I was planning to give some historic perspective before coctails start, but then, coctails started, my historic perspective is, well, in progress (I promise, it’s in draft, at least one sentence is done!), so anyway, I am now closing off day 4, and as such, the first good day.

Days 1-3 were spent:

  • Getting IV at the hospital; now, this usually takes let’s say 2-3 hours. Not very bad in itself, but makes you sleepy beyond measure, and for me, nauseatic for the afternoons/evenings. I also learned you don’t do IV walk in chemo in the morning. I had appointments for 8:30am, which, for my colleagues, is clearly evident as something I didn’t consent to: unless something is burning I usually don’t turn up even at the office before 9-9:30, and then, only for coffee (okay, maybe this is exaggerating a bit). Well I did give consent (because of things explained below), and now I know I won’t, ever, do this again. Veins still sleeping, meaning the wonderful nurses have to wake them up using these hot gooey bags, then the veins are still not awake, so veins got busted (OK, only one got busted on Monday), so anyway, no coctail in mornings. (Which should be true for other coctail invitations as well, frankly.)
  • Getting my first Simonton session on Tuesday. (This was the reason to put chemo appointments to early in the morning.) Simonton is a therapy that complements (not replaces — important!) chemotherapy. From where I sit, it’s not the hippie kind of treatment where you apply some leaves and gujarati poems and that will heal you; this is actual science, developed by an oncologist/radiologist, and having good results. More info on the internet, if you’re interested. More likely than not I will post about my own experience with Simonton. But not after the intro session.
  • And apart from this, generally laying in bed with my nausea and my sleepiness. Okay, this is not true: yesterday afternoon was OK, only the evening not so much.


Today was a whole different ballgame. I didn’t need any anti nausesa pills (by the way, we are trying out practices usually suggested during pregnancy for morning sickness — so far seems to work: eat some cookies/bread/yoghurt immediately after waking up, never leave your stomach empty, always have something to absorb the excess acid, etc.), I did a shitload of (small) stuff around the house including unsiccessfully tring to fix our washing machine that stopped working yesterday — it’s the thought that counts right? But the point is, I was moving around, eating, and…

taking a 2 km walk!

I’d say the Giro d’IJburg, but that’s some 4.6 km, maybe 5 even. Anyway, the background story to this is I literally didn’t leave the house on foot since the beginning of March, the beginning of my 40 degree fever spree. (Driving to hospitals from the garage does not count. Also, I was never driving, Juli was. Even that was too much for me.) So we are looking at an almost 2.5 month hiatus from WALKING. Not running, not walking distances: WALKING. So I’m very happy to have been finally able to do this both feverwise, and energy wise. Afterwards, a big carrot cake at Beans & Bagels, and an attempt at an overly sweet glass of hot choc. (Attempt failed. That shit was way too sweet.)

By the way, B symptomts! (B symptoms: symptoms that are not cancer cells, lymph nodes. So: fever, chills, night sweats.) Now Prednisolon, one of the many pills I take, was said to reduce these to zero, and apparently reduce them it did:

  • Fever: totally fever free today.
  • Sweats: some sweat late in the morning, but nowhere near to the “change the whole bed 4 times a night, get a total of 3 hrs of sleep” nightmare.
  • Chills: long gone, luckily. Also, I learned some visualisation tricks to seriously reduce the impact by the end. More on this later too, I guess.
  • Weight loss: well, I did lose ~10 kilos during the 40 degree fever run-up period, true. (Most of it from my legs, see lack of walking above, and I guess some of it of dehydration, bacuse of the sweats.) Since then I gain and lose around 2 kilos on a daily basis; now I’m on the low end, will get better for sure. But it does not seem to contuinue dropping, and I do expect great improvements once I can walk, maybe even run, on a daily, bi-daily basis. (I still mustn’t lift stuff to prevent my enlarged spleen from rupturing, but I can do “leg sports”.

So (pretty much) without the B symptoms, with no nausea, some energy to spend on stuff other than the basics, I second Mr. Cube in saying today was a good day.

My next post will hopefully be a brief overview on the way here, so fill that void for the English audience, and bore my Hungarian (but English reading) audience to death.

Birth of a blog. (Ie.: helloworld!)

After 2 months of high (40°C high) fever, some weight loss, etc., on April 22nd (Earth Day, woohoo) I received my diagnosis: I have Classical Hodgkin Lymphoma, a cancer of white blood cells.

One of the easily treatable ones (according to doctors), treatment is ambulant, or “walk in” (you walk in in the morning, get your coctail, walk out in the afternoon), but still: fuck, it’s a Lymphoma.

And still, I’ll have to do treatment (chemotherapy) for a couple of months, and work out my coping mechanisms. One thing I thought of (actually, before the diagnosis, during fever time) is to draw. Now I can’t draw for shit; but I will (plan to) try, and maybe tell part of my story through little cartoons. There will be text posts too, I’m sure (because writing I’m significantly better at.)

So with that, this blog is now officially started, and I’ll start uploading stuff in the coming day(s)/week(s).

Oh, a word on the logo/favicon:



If you know Conway’s Game of Life, this shape is called the Pinwheel. (If you don’t know the Game of Life, it’s too broad a topic for this post, but see the link.) It’s an oscillator that, in 4 turns, returns to it’s original shape. But more importantly, this little guy is spinning without end, which I think is a nice metaphor. You can see it in action here.