Logbook – Km 28

Time goes by fast for everybody. Day 133 of my illness: it’s been already 4 months and here I am, in the route of the battle. The simplest things, the smallest and most insignificant ones can have a huge weight in this fight. I leave here a graphic maths message, an illustrative example of my statement.

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If you do something as trivial as 0.01 one day it won’t have much importance, but if you do it during one whole year -365 days- the final result will be relevant: almost 1300x more important than if you stop doing it. Determination, perseverance, and sacrifice are values not easily found in our society – at least nowadays-, so… if you resolve to do it, you can as well!

Today I write back in my beloved blog, there will be a time in the future for more videos. Last week I should have started the fifth round, but it wasn’t possible due to the neutrophils: I had 950 per uL… And this week it was even worst: 810 /uL. I should take matters into my own hands:

Dear white cops with a golden star on the chest,

I am writing to you because I am extremely deceived with the strike that you are doing these last weeks and with the fact that you don’t increase your numbers when I get my blood drawn on Mondays. It is important that the chemotherapy cycles are given without delays so that the cancerous cells can be eliminated as soon as possible. Up to now I have not seen their face, but I am pretty sure that they have a big red nose and spiky hair, in case this piece of information would be useful to you. Spare no expenses in resources to recruit troops against these evil cells.

Looking forward to hearing from you next Monday.
Sincerely,

Dani

My doctor told me yesterday that the neutropenic delays are in fact quite normal, and that kids recover from neutropenia much more easily than adults do, and that what is left to do is to adapt chemotherapy doses. I really thought that the growth factor (GF) had been effective this time – i.e., the Filgrastim injections I take during 7 days right after chemo to stimulate the generation of cell populations in the bone marrow, because I had a terrible bone pain during one and a half days. However, the chemo toxicity stays there and there’s nothing that the doctors – or me – can do, we can just wait. Therefore, we’ll wait for one more week. And for the next cycle, now that etoposide has been fully removed, the ifosfamide dose will be reduced from 9 g/m^2 to 6 g/m^2.

The only positive point -if any- of this delay is that I’m one more week off the hospital. You can’t imagine how happy I am after knowing this. Although I know that there’s still a long way to go, every time I’m at the hospital for the blood test I feel a bit sad. There, in that large room, we meet the same faces again and again, we get the vacutainer tubes in a transparent tray and we make a line like zombies. And my head switches to “chemo mode”. On the other hand, I’m also happy because “almost every time” I’m there, there’s less way left to get to the finish line.

Side effects are accumulating

I’m more or less recovered from the palpitations or heart arrhythmias. As I told you in last week video, this time they were much more important than in previous cycles. However, I’ve discovered some other things that have appeared in my body without making much noise, but there they are…

DSC_0120For instance, my thumbs’ nails are growing with a wavy and scaly surface in the proximal part. They look like the growth rings in trees: one for every chemo cycle.

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Some moles and freckles have appeared in places as strange as the sole, fingers, belly, etc. My doctor told me it’s normal that the chemo toxicity accumulates in the skin in such ways.

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Moreover, a couple of extra weeks without chemo mean that some hair “sprouts” start growing on my shiny bald head. The funny thing is that this fuzz is white-colored. My wife and I can’t avoid laughing thinking what would happen if I become redhaired – cell mutation has already happened, so why not? xD Have a look at an illustrative example right below.

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My bald head looks like a peach xD

Charitable change of look

My wife was thinking for months to have her hair cut, but she didn’t want to do it without knowing how to donate her hair before. Our usual hairdresser has arranged the shipment to Mechones solidarios (www.mechonessolidarios.com, translated as “charitable locks of hair”), an association that will knit a wig so that any sick girl could have Hispanic-Brazilian high-quality hair 😛 -thanks, Cons and Patri :)-.

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Nathália -a.k.a Victoria Beckham- and her 25-cm-long charitable lock of hair

I introduce you to… Krasimir!

Arturo’s mother, Pilar, talked to me about kefir some time ago. I didn’t know too much about it, and, to be frank, I didn’t look for information about probiotics until I had the kefir in my hands.

Kefir is a combination of yeast and bacteria that ferments lactose and turns it into lactic acid while producing carbon dioxide and ethanol. Milk kefir is a slightly alcoholic beverage -less than 1%- with a consistency and taste similar to thin yogurt. According to Wikipedia, its consumption provides benefits such as the modulation of the immunity system, of the metabolism, and of the intestinal flora, as well as wound healing. In vitro studies have shown anticancer action on various types of cancer cells19.

As it comes originally from the Caucasus and I love putting name to every living being falling into my hands, I called it Krasimir, that rhymes with kefir 🙂

The fabrication procedure is very simple:

  1. Put the kefir grains in a glass container -they look like cauliflower bunches-, add milk until they are fully covered and leave it closed for 24-36 hours. It’s important to leave at least 1/3 of the container full of air so that the pressure inside does not increase too much.DSC_0121.JPG
  2. Once the day or one-and-a-half days have passed, you can filter the yogurt from the kefir grains by means of a plastic yogurt maker. It’s very important that the utensils and tools in contact with the grains aren’t metallic because kefir’s acidity could attack them.DSC_0123
  3. Every second or third day the grains should be rinsed with non-chlorinated water -never with tap water- as it could deteriorate the grains.DSC_0127.JPG
  4. You can start with step 1 and… enjoy the result!DSC_0128DSC_0129

It’s very interesting this thing of producing your own yogurt by yourself. Thanks a lot, Pilar, for the grains, the yogurt maker, and the glass container 🙂

My project

Last week an article was published in Science magazine in which it was claimed that 2/3 of cancer cases appear randomly. Do you know what this means? That we need to invest in research to be able to have an explanation to what nowadays we call randomness.
I won’t stay twiddling my fingers, and this is the reason why I’m determined to organize an outreach event in Barcelona. For that purpose, I have the support from 8 research institutes in Catalonia, besides various foundations. I’ll give you more details once I’ve tied up some loose ends 🙂

Ainhoa’s story

Some weeks ago I had the uncontrollable need of getting in touch with other patients to share experiences, anecdotes, doubts and tips. It’s very complicated to find Ewing’s sarcoma patients, so I  resolved to write in all the possible social networks: world groups on Facebook, national associations against cancer, of sarcoma patients, foundations, etc. It was like a broadcast distress call, but it worked: somebody replied to my post in the forum of the Spanish Association Against Cancer (AECC in Spanish).

It was Ainhoa, a 30-year-old girl from San Sebastián who’s in love with life and has been struck by an “Ewing’s-like” sarcoma. A different mutation within the rarity. Besides age and illness, we also share a passion for writing and tell others our stories. If you want to practice some Spanish, here’s her blog: https://menosmiedosymasganas.wordpress.com

It’s a great relief to find somebody like Ainhoa, and we have a pending Skype call once she gets everything back to normal, isn’t it? Thanks for sharing your story, Noita. I’ve stolen a quote that I’ve loved from your blog, from the great José Mújica:

“(…) But this is what I want to make people understand: you can always pick yourself up again. It’s always worth it starting from zero again, once, or a thousand times, as long as you’re still alive. That’s the biggest lesson in life. In other words, you are not defeated until you give up the fight. You give up the fight by giving up the dream. Fighting, dreaming, being down on the ground, confronting reality, that’s what gives meaning to existence, to the lives we lead (…)”

A few people know that the former Uruguay’s prime minister donated 90% of his presidential salary to charity.

Well, my friends, it’s about time to say goodbye and, God willing, see you after the fifth round. A big big hug.

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One thought on “Logbook – Km 28

  1. Hi Daniel! Thank you for posting! I know it must have taken a lot of your efforts.
    I wish you good luck and nice recovery! You are so brave, a true man!!!

    Can

    Like

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