Complete Remission.

It’s September 28, 2015, and I will remember this date. Got the results of the PET scan I had last Thursday, and the result is


So there is no cancer activity in my body, it’s gone from my lymphatic system, from the thorax, from the neck, it’s gone from my liver and my spine. Chemo worked it’s charm, and I don’t need radiation therapy.

Yes, we are happy! (Although I’ll admit we haven’t fully embraced it.)

My blood results are also good: Hb at 6.9 (meaning it’s gone up 1.3 units in a week, from 5.8, which is better than anticipated), Tr is 145 (up from 100), Lk is 3.5 (down from 4.1; but 4.1 was brought to us by GCSF). So while not up to normal levels just yet, it shows my body is generating stuff on its own, or to phrase it differently: my body is standing on its own legs again. (OK, to phrase it wrongly.) And, while we are at it (statistics, that is), my weight is around 88 kg by now, pretty much the target I’d say.

So what’s next?

Date of next checkup is end of November. And next steps are to deal with the remaining side effects. Apparently I have a bit of withdrawal from steroids (who doesn’t!), so my face is swollen, red and full of little pimples, oh and it itches like there’s no tomorrow (so does my back and my arms); my joints hurt (hips, legs, elbows, shoulder, lower back), and some veins are acting up because of the chemo I took in.

On the bright side: my neuropathy is almost gone, in fact, if it happens to stay like this (but it won’t), I wouldn’t even be very upset. I can feel it’s still there, but I have sensation in my fingertips and all.

So after all the fear and pain and everything, I now know it was worth it and I’m on the right path.

Oh, and I can finally delete the movies from my computer… the ones I kept in case I have to spend a long time at the hospital — the superstitious fucker that I am…

today was a good day

PET CT, the results scare, and how to handle it.

Tomorrow is PET CT day, and we were scared shitless on what the results would be… as you would possibly be too, in similar situations. (Of course my PET appointment conflicts with my Simonton appointment… but that’s nothing unmanageable.)

As usual with a scary situation (especially one with waiting involved) your brain has the time to entertain you with all kinds of… Continue reading PET CT, the results scare, and how to handle it.

Blood results, stats geekery, aftermath.

Monday’s blood results weren’t as bright as I’d hoped: wbc at 1.7, rbc at 6.0, meaning office visit for this week is definetely out of the picture, and so is most of anything. I’m not saying I’m not disappointed, but then, this is the learning bit for me: I’ve never been good at patience games. Discpline games (like a treatment), yes. Patience, no.

Anyway, I did a bit of a calculation, this is why it’s good to have all blood results at file, so you can do calculations. Left alone (so not bombed by chemo), my body seems to generate about 0.3 units of rbc per week. Considering a conservative growth pattern (so not assuming that rbc generation speeds up as time goes on), this means it’ll take around 8-9 weeks until my red blood count gets back to normal territory (8.5 is the bottom of the normal range). I can’t do the same calculation for wbc as my wbc has always been assisted by G-CSF, but safe to assume it’ll take a similar amount of time for it to go back to normal, too.

With that, I spent most of my yesterday sleeping, and generally feeling like shit. (Like shit that’s also sleepy.) That seems to be gone now (walking a short 3.6 km helped big time), but I’m still anaemic. Also, this is still a 3rd week, so what do I expect other than regular 3rd week stuff, right?

Last but not least, an inventory of residual side effects:

  • Anaemia: as above, this will probably take 2-3 months to go away.
  • Neuropathy (reduced sensation in my fingers): I still have it, healing time in the range of “weeks, months”, according to the doc.
  • Arms and veins: they hurt a bit, time to time, I guess the IV doesn’t just go away that quickly. Not a major annoyance though.Hair: stil doesn’t grow, not that I’m bothered… Will start growing in “weeks, months”, I guess.
  • Eyebrows, eyelashes: they need to grow back. I have 1 (ONE) eyelash that is still around. Hang in there, little hero hair!
  • My face (through which I am detoxing at the moment and it looks like Mickey Rourke’s): this is an interesting one, so far Prednisolon was the answer — I wonder how long it’ll take without my ‘roids.

This is more or less it. I was thinking about drawing a diagram and a Plan-on-a-Page (I’m a PM or what), but… meh, instead let’s go to the playground with the kids!

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!