C06d14: Fear and Loathing in Enkhuizen!


From the looks of it (although I don’t have my blood results from today yet, so no way to tell), I OD’d GCSF a bit again. Yesterday morning I had to resort to my last resort Oxycodon to counter the bone pain… But it was nowhere near That Saturday.

Anyway, the day turned out to be one of those “random perfection” days, despite how it started. We decided to have me rest (ie. no walking or cycing), and to do this, we drove up to Enkhuizen (well, with me drugged, Juli did all the driving of course) – a city I literally picked on Google Maps simply because the Houtribdijk starts there and it’s relatively close to Amsterdam by car. I then found out it is a fairly old and significant city too — even better, I thought. And there is “some sort of museum” there too, so we can go in there, or we can just walk in the city a bit and find some food with the kids, and call it a day.

By sheer luck, we took a “wrong” turn and ended up in the parking lot of the “some sort of museum”: the Zuiderzee Museum, and once there, decided to take a look. 45 bucks for the whole family, small building, we were absolutely without a clueon what we were getting into… and it’s perfection! I highly recommend it to anyone with a family. Boat trip from the “small building” to what is practically an old Dutch fishing village, with all sorts of old crafts, clothes, toys, food… Perfect for both kids and adults.

Long story short, we didn’t go to Ekhuizen, spent the whole day in the Museum, my bone pain got much better, and the day, combined with perfect Dutch weather (that is: some rain showers, some wind, but a lot of sunshine), turned out to I think the best day trip I’ve ever had with the family. What a way to finish a second week in the cycle!

Some photos below (and some on Instagram, of course) – enjoy!


Somehow this cycle seems to end up being the messy one, even if only a little.

First things first, day 15 blood results: everything is considerably (but not too) low, wbc is at 2.4 (better than this time last cycle), rbc is 5.7 (worse than this time last cycle), platelets 28 (worse than this time last cycle). I have since administered another shot of GCSF, so wbc is probably on the OK side by now, and yesterday I also got a blood transfusion so rbc is up to 7.2.

For some reason I didn’t feel the anaemia on Monday. In fact, I decided to put up some shelves, fix lamps, drill holes in the wall on Monday afternoon — something I shouldn’t have done, as I felt almost instantly afterwards.

I already had something in me that I probably triggered by overloading myself. Anaemia kicked in (drumming and white noise in the ear, fatigue and loss of breath, strenghtened neuropathy), and if I have to guess, I got myself some hidden sinusitis activated. (Which is not a particularly good thing when you are in chemo.) Then, at the hospital my fever went up to 38.4, and I generally felt like shit for a couple of hours, slept through most of the day. I couldn’t even go out for a walk in the afternoon, not something I often pull! (And just to add to the whining, this all came when my usual GCSF induced skin/bone pain was also present.)

Long story short, fever went down, sinusitis all but disappeared by now, and I feel a lot better — I won’t cycle today for sure (which is a pity, I wanted to see Sail Amsterdam), but I’ll probably do a 5 km walk. And I still have 4 days left of the “rest week” before cycle 6.

Learning: no drilling and stuff alone!

The Incredible Machine.

Not until you get into some sort of treatment you realise what an incredible machine a human body is. When everything works normal, and you are doing your daily life, and It Just Works (like Ubuntu should… haha), all the organs doing their stuff, in balance. You can try to kick it out of balance, but unless you try very hard (like with the cunning use of a hacksaw or something), it will find its way back and continue Just Working, ni balance.

When you are in treatment like me, your balance is broken and held up by medicine. But this balance is very easily broken and you need all the discipline (see practically all the posts in this blog) to keep it running more or less smoothly.

My artificial balance has been working quite nicely, but it can just as easily fall out – I mentioned this, chemo for me has been pretty much dealing with a list of “nuisance level” side effects, and I truly believe it has been the strong discipline that helped me keep it that way. Or sheer luck, how the fuck would I know — I haven’t dared breaking the discipline.

Well this round was somewhat special in this sense, in that I broke discipline a bit at the beginning (well, life broke it for me) and it butterfly-effected down to some disturbance in the Force balance:

Stomach problems around day 6 → had to do a diet → no proper food intake, stomach was empty on day 8 → reflux caused by bleomycine (day 8 IV drug) was quite strong → this may or may not have added to the (sorry, naturalistic details follow) fungal scar in my mouth for the past 2 days → eating hurts → further stomach fuckupery could ensue (but I forcibly force myself to force eat (some force)) → luckily it seems it didn’t though, I seem to be back to my artificial balance.

Point is: you have to have strong discpline to keep the balance, and a tiny detail can cause some big waves.

Also, while we are here: a big shoutout to 21st century medicine, you da real MVP. (One of them anyway.) It’s fantastic to see just how thousands of years of human self observation in a way or another has lead up to this point, where I am getting my white blood count artificially restored by the use of a granulocyte colony stimulating factor extracted from freaking RATS (although now that I mention this, I can not find an article to back this up… did I just dream it?…)

C04D10: fun with the new side effect, and D11 preparations.

My new fun side effect goes by the name Polyneuropathy:

Polyneuropathy or symmetrical polyneuropathy (poly- + neuro- + -pathy) is damage or disease affecting peripheral nerves (peripheral neuropathy) in roughly the same areas on both sides of the body, featuring weakness, numbness, pins-and-needles, and burning pain.

What it comes down to in my case is numbness in my fingertips, more annoying than a real problem. For now, there is nothing to do, this is chemo side effect. Doctor’s advice for now is keeping our eyes open and if it’s getting worse (e.g. I become unable to type or use my phone), dosage will be reduced for the remaining rounds.


D11: tomorrow I’ll have a long day. Monday’s results showed anaemia again (C04D08 blood screen: Hb 6.1, Tr 105, Lk 2), so I’m getting blood. I’m doing my normal workouts, but have trouble doing stuff that requires brain, or more precisely: that requires my brain to require oxygen, I guess. I suspect this blogpost is ultra basic too, but I’ll go with the basics happily for now. Like “we watched Tropic Thunder yesterday” basic.

Okay, so here’s the schedule for tomorrow:

  • I start at the Dagbehandeling at 8:30 (ouch), to get myself cyborg’d up (okay, I’ll get a branula for the day), and to do the cross check for blood type (fun fact: they always have to do this before blood transfusion, even if your blood type is obviously known).
  • Then over to CT – this is exciting on its own merit (first time since the start of the treatment to actually see how much progress I’ve made), but I’ll only get results on Monday. CT starts at 10:00 (for thorax; and 10:07 for abdomen), no eating beforehand (boo).
  • After CT, I’ll get to eat something (yay), and then head back to Dagbehandeling, where 3 packs of blood will be waiting for me. Blood transfusion takes 4.5 hours plus tax.

So I’ll basically spend my day at the hospital tomorrow (not thrilled), and there is a chance I’ll have some bone pain starting too (G-CSF week, remember?), but on the other hand, will come back with new blood, and I suspect (from experience) I’ll be in high mode on Friday.

Oh, and: next week we are off to Leidschendam, for a mini holid(y)ay!

C04D01 status: some good news, and some more good news.

First off, C04D01 blood results, my feelings were right about me being in a good state: Hb (red blood cells) 7.4; Tr (platelets): 256; Lk (white blood cells): 5.5. The blood screen of a healthy person! Wbc probably something to do with the G-CSF I shot last Monday (but still good to know I can get it up to a normal value without too much pain), red blood cells and platelets increased on their own significantly during rest week. Yay!

Other piece of good news: I will only have 6 cycles, not 8. Not sure where this comes from (or rather: how could we misunderstand 6 for 8), but now it’s confirmed by two doctors, so I decided to believe it. Yay!

I’ll also have a CT sometime next week (tbc next Monday), to see (or rather: not see) my tumors.

This is how we roll in C04.