C05D06: side note on side effects.

Fell silent for a couple of days, but that doesn’t mean life ain’t happening. I started C05 in the meantime, blood results were mostly good on day 1: rbc and platelets perfect, wbc a bit low. Doc tells me this is normal, bone marrow is getting tired of this roller coaster of “don’t generate wbc now” – “no wbc at all now!” “wait for it” “NOW generate a shitload of ’em!”, so the usual amount of stimulation was only enough for a 3.9 wbc. It’s OK, but could be better.

Nothing much to report apart from this, so this will be a post on some side effects, because why not. And because I am by now convinced that chemotherapy is mostly about dealing with the little annoying side effects, and some big ones.

My fungus thing comes every cycle like clockwork: day 5-6 of the cycle, I can blindly start taking my Fluconazol, because if I look in my mouth in the mirror, I’ll surely see them — the fungi.

Anaemia: by now, apparently anaemia is a clockwork thing too (for these last remaining bits), comes in around day 4-5. Impacts my stamina somewhat, and my brain a lot. Workouts help with the stamina thing, I operate like sherpas do: can execute physical activity even with low blood oxygen. I could be a sherpa. “A scarce breed in NL,” Ian would add!

Just to be clear: the fact that I’m anaemic does not prevent me from doing sports. As a matter of fact, I got this toy yesterday:

 

elbow rest for the hassled vein kid #cycling #chemo

A photo posted by Gergo Lippai (@lipilee) on

 

Hair loss. The side effect most commonly associated with chemo. (Together with the extra water you retain because of Prednisolone, it results in that typical bald-n-chubby chemo patient look.) When you think of it, you usually think of hair on the patient’s head; well, that’s only part of it. Eyelashes (I have around 12 of them left, total), mustache and beard (not that I had too much in the first place, now there’s none), most of the hair on my legs (calf, to be precise; I look more and more like a pro cyclist), and, we need to talk about this as well: pubic hair. (By now, all of it.) Oh, and btw: apparently these last 2 cycles, the hair loss got stronger (I guess the amount of anti-hair stuff from the chemo adds up), for example my eyelashes really started falling out in the past 2 weeks.

Skin. Yes, chemo patients are not supposed to go out on the sun. Reason: we don’t tan, we burn. We need to use 50 factor sunblock if we do go out. Except when I did it, got burnt even with 50 factor. Or allergic, who knows. Nevertheless, I drove around 30 mins on the sun (well, in the car, that was on the sun) the other day, and got burned very badly. Swollen read intchy head badly. So I ended up just not going out on the sun at all. Direct effect of this is it gets boring inside during the day, and of course I only do workouts just before sunset.

Well, that’s it for today and on side effects.

Quick update on weight: I’m over 86 kg. Lot of it is muscle!

C03D21: 6.3 km in a day, 63 km in a week.

Cycle #3 is coming to an end, and I think so far this is the cycle with the best general condition — of me, that is. Not sure where wbc and rbc and all those good things are (we’ll see tomorrow), but lookie here:

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This is from my Endomondo stats page. You can clearly see the improvement: 42.23 km in the first cycle (consisting only of walking, that’s the purple bar there), 63.59 km in the second (did some cycling and running there as well as the walks), and 128.23 in the third — with some running and a lot of cycling over the walks. Seems some kind of exponential function, so supposedly I should do around 350 km in cycle #4… Geez, what have I gotten myself into.

By the way, the last 6.3 km was actually me playing tourist with my mom in Amsterdam (finally! it only took 8 months):

 

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You can see the rest of the photos here. Also see the tendencies in the second cycle: Fateful Saturday took its toll.

I am wondering what metrics should I measure. Once the bike is in use, kms are not that relevant, and calories I don’t give a shit about; after all, I am trying to gain weight here. (And with success: steroids plus workouts are my friends.) I was thinking of coolories… as in “running 4 km is cooler than cycling 10”. Can someone let Endomondo know?

Anyway, just wanted to articulate that in this cycle, I felt as if I could start cycle #4 on the second week already, and that since the beginning of my chemo, this cycle has been the best in terms of feels. That’s a good thing, right?

C03D10 status – cycle 3 almost done (and some stats geekery.)

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Can it be so, that I haven’t posted stuff for more than a cycle? Naughty hobby blogger!

First of all, an executive summary, to answer the most frequent questions on status of my treatment:

  • I am in the middle of cycle 3, out of 8 cycles — so 5 rounds left
  • I am generally fine: side effects are mild and manageable (apart from some not-so-mild), I’m doing daily workouts, and doing some work (not very much)
  • I am anemic (not enough red blood cells), but my body is getting used to it, and as a result…
  • …I continue doing my daily workouts (running/cycling/walking) — check on Endomondo (accessible only to Endo friends), InstagramFacebook, or my related publicGoogle Photos Collection
  • There will be a big checkup with PET/MR, with lung and heart checks after cycle 4 (in about a month’s time); doctors will be able to comment on treatment progress then, but it is highly expected I’ll have to do the full 8 cycles to be on the safe side, regardless of the results
  • My spirit is high, and I am mostly in a good mood (as Juli can attest), and I receive tons (thanks!) of support from family/friends/colleagues
  • Wife and kids are doing great too: even with the side effects I am in much better condition compared to the 2 months of 40 degree fever back in Feb/Apr

OK then, on with the blog!

I have finished the IV part (or hospital part, call it whatever) of cycle #3 — GCSF part (you know: shooting yourself in the leg every day) is in progress. This time I’m doing 4 shots: Mon-Tue-Wed-Fri (so no Thu); hopefully this will help reduce (dare I say: avoid) the bone pain.

Still on the technical front, my blood results from the last couple of weeks are good surfing ground: from C02D08 onwards my red blood count was increasing steadily (besides WBC) all the way up to 6,5, thrombocytes to 331 (to pretty much normal values) — until this Monday when it dropped back to 5,3 and 142, respectively. WBC is down to 2,3. Not particularly good results, but from what I understand this fluctuation is normal after the IV part, and with the treatment in general: after all, chemo affects quickly generated cells, like blood cells (and hair, and skin, etc.) “Like the Assyrian empire”, to quote a classic… We’ll see how they go up again on my “rest week”.

More importantly, I decided to get a blood transfusion with the 5,3 rbc value, it is way too low, and for the days before the blood check I had felt some fatigue, a good sign of anemia — probably a good idea to get it over with so I have a good 2 weeks before the next round with a good energy level.

Even more importantly (and to move from medical jargon to to stats we all hold so dearly)), this didn’t stop me from doing my little workouts — typically 5+ km daily walks, or around 2 km runs, or, e.g., a 14km bike run on the day of the 5,3 rbc value. The panorama above the post is actually from that trip to Durgerdam. Absolutely lovely place with old wooden houses, boats (duh), and around 430 inhabitants. (Something I hadn’t noticed is on the left side you can see part of Juli’s bike and on the right side a part of Juli. Could just crop it to clean it up… but won’t.)

The key point is still: do something every day. If that doesn’t work out, then as frequently as possible. And despite the anemia, last week (22th Jun – 28th Jun) was a pretty solid week:

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(This week may be somewhat better even, pending the GCSF effects. Also, I’m counting kilometres; at this stage I don’t care about calories you understand.)

In fact, last time I did this much was in November last year, a yet fully healthy month (well, supposedly.)

So to finish off on the good, sporty tone, and instead of a picture of a potato, here is us, wife and yours truly, on our bike trip:

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Cycle 2, 2cycle, bicycle!

Cycle 2 has officially started (what started, I’m already past the IV injections of the first week!), and what better way to celebrate a new chemo cycle 2, than to…

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…2cycle!

That’s right, I dusted the old Torpado (it’s not old, less than a year I’ve had it), blew half a can of WD-40 on the chain and the brakes (not the brake shoes, no), as the last time I used the bike was on a very rainy February day when I decided to dry myself and just toss the fiets in the locker room — result is the chain being basically a rusty piece of fixed metal, an art piece in the shape of a bicycle chain… but as we know:

If it moves, but it shouldn’t: Duct Tape.
If it doesn’t move, but it should: WD-40.

But where was I… oh yes, cycle^2, cycle 2, 2cycle, bicycle, that sort of thing. (By the time I came up with this title, I had to google “bicycle” just to see how to write it. I’m distracted easily, but that’s the Prednisolon and it’s lovely side effect, sleep deprivation. Anyway, where was I. Right.)

The above picture was actually taken on the 3rd day of chemo IVs. I came home, had a good hour of sleep, then went out for a 8.3 km Giro d’IJburg. On chemo day. I had some nausea, easily managed with my friend, Ondansetron — 1 pill, when the max is 3/day. Also, I’m getting the sleep problems again (it’s the ‘roids), but the worst part of this is actually being pissed off at 3:30am on why you can’t sleep — if you accept this, maybe read or do some stuff (blog, for example, and organise your photos), it’s not that bad. Other than that, and dare I say, cycle 2 so far has been better than cycle 1.

It seems the more fitness you do, the better you take these IVs. Side note: I also love my veins, as Juli can tell: they are in pretty good condition now (chemo supposedly will impair them significantly), and I believe (and see, actually) that doing even the walks, and in general keeping blood flow and circulation up helps them a great deal. It also helps the nurses who need to find the vein for the IV if the vein is nice and thick and hard. (Yes, we are talking about veins.) So I think keeping fit is probably the most important thing you can do for yourself if you are doing this kind of treatment.

Weather’s also treating me nice these past couple of days, I did these panoramas in beautiful early summer Amsterdam weather:

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And this Tinyplanet (Google Photosphere/View will be added to Google Street View soon):

IJburg skies, IJburg bikes #tinyplanet #ijburg #amsterdam #cloud #cloudporn #sky #skyporn #cycling

A photo posted by Gergo Lippai (@lipilee) on

Bottom line: sports are good. Do sports, people.

(By the way, I’m using Endomondo. You can Friend me there, and see details of my rides.)

Oh, weight status: 79.6 kg. I didn’t make the 80 kg mark as planned by end of cycle 1, but I almost did. I practically did. If my phone is in my pocket, I did. Shit, even then it’s only 79.73 kg… Maybe my keys also?…

[And a distracted Gergo walks away contemplating on weight of small objects in pockets…]