Gergo Lippai

C05D15-19.

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?…)

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 Aug 7, 2015 at 11:09am PDT

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!

C04D15: CT results.

So I had a CT on C04D11 (Thursday of the second week of the fourth cycle — this now sounds like the specification of a religious holiday). (Also, we don’t start a story with “So I…” Well, I just did.)

Also, I would have posted this earlier, except we went on a holiday… the kind where there is no WiFi, and where there are horses. Like this gorgeous guy:

CT results are in, and we are HAPPY. (Doctor: “I am happy, that means you should be too.”)

Lymph nodes are generally smaller than they were at the time of my original diagnosis. Although size can still be bigger than normal, this can also be because of some “scarring”, ie. when the cancer cells disappear from the nodes, they still have these scars (fibrous tissue, maybe?), adding some size. Sounds scarry!

Lungs are OK. (We knew before too — I didn’t have any problem with them during treatment.)

Splenomegaly (enlarged spleen) is gone, my spleen is back to normal size — this also means the hypodense areas are now healed too. I can start lifting shit.

My liver is close to OK too: although I didn’t get a chance to process the values, they are “very close to normal” according to my doc, which, considering some of the liver values were almost 20x the normal value back in Apr, is a good thing too. (But again, no details here, yet.)

So what’s next? First of all, Cycle #5. Then, Cycle #6. Then, 4 weeks of returning to normal life. And then: a PET/CT to see them lymph nodes are really the real deal and even if some of them are somewhat bigger still, there is no active lymphoma in them.

So far so good then. For me the two big takeaways are these: my approach to the therapy has been verified as working, and my spleen is back to normal, no risk of a rupture.

To close, a rooster:

Hb +1.5.

Just received my 900 ml of new blood today. This should bounce my Hb count to healthy levels, +.5 count per pack as I just learned.

Very funny feeling this, when your brain, operating on backup power for the better half (actually, most) of the past week, suddenly starts up and starts processing stuff other than what to eat, get off the couch and go shower, and let’s watch Tropic Thunder and Graham Norton Show.

And now suddenly I want to

go cycling (did it the past days, but at the end I was dragging myself a bit)
go take photos
do work
go sit in a cafe

and stuff.

So to put it in another way, at first I was all like

and

But then I

‘d, and now I’m like

So there. And now: walk!

(That red pic by the way is from Terminator, in case you were wondering. The famous “aux batt” scene, anyone?)