Rest days, walks around IJburg.

IMG_20150515_182535

 

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.

today-was-a-good-day

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.