We were all together having lunch at my parents’ place when my mother said that they -mom and dad- were going to sign up for a solidarity race. At that moment I almost dropped the cutlery to the floor. My mother, who doesn’t even have a pair of trainers, wanted to run the night race of L’Hospitalet, and she had my dad as an ally, hahaha. Well, it seems that it was somebody in their group of friends who had suggested that, and in principle, they were going to be several couples. What happened is that after the initial euphoria all of my parents’ friends backed out – the wine that is served in the restaurant they use to go on Saturdays has to be checked, because it goes too much to the head, hahaha.
Nathália and I also decided to sign up, 5 km isn’t that much. So, the four of us signed up, we also tricked my in-laws, and my mother bought a pair of cool trainers -see the picture below. Indeed, apart from my brother-in-law Phil and myself, nobody else from the group had ever run a race. To make this even more epic, Phil had run a mountain half marathon that morning, ‘lol. When registering, one could donate 1€ to the Catalan Asociation of Cystic Fibrosis, and this is what we did, even though we would have liked that a higher amount of the sign-up fee go in favor of this cause.
Dear organizators of night races in L’H,
What do a runner need a bottle of sparkling wine for? To dip the energy bar and the banana that were into the bag? Ahhhhhhh
The race progressed phenomenally. At the start line, we placed ourselves quite behind, all together, in order not to disturb those who run for time. Some minutes later we were already separated and the initial coldness disappeared. To be honest, I had never run such a short distance race. Those who know me know that I either run a marathon or I stay at home, basque-style, hahaha. Because of this, and of the fact of being next to Nathália all the time, it was a very different race, yet very special. She discovered that she can even enjoy running -I think that neither her brain or legs were aware of that :p-and giving 5 to the kids encouraging the runners by the sides. And also the fact of running with your family, a Saturday night, was something unforgettable. The time at the finish line wasn’t important, but we managed to finish it without Nathália stopping a single time, so I felt very proud of the training in the previous days 🙂
Some might think: what an irresponsibility to go running being in treatment! To these ones, I might reply: sport is health in my language, and if I can make the most of my last week before the chemo session, doing what I like and makes me feel good, I’ll make it. Maktub!
The last cycle, for a while…
I thought this day would never come, but I can already say that I’m a cancer patient who has finished the induction chemotherapy treatment. Yoo-hoo!
On Monday, April 24, day 157, I got the happy message that my neutrophils were more numerous than ever since I started the treatment: 1260 per uL! What a success! Taking into account that the etoposide was already removed from the treatment -following a double dose reduction- and that the ifosfamide dose had also been reduced, it was about time to have some results! The initial plans have been delayed 6 weeks, but I don’t care because I feel good.
However, this time I couldn’t start either in the morning or in the ambulatory part. I was admitted on Tuesday afternoon and, as you can guess, I was “plugged” a great part of the night. The only advantage I could see was that I could be given intravenous Mesna instead of repeating the scene from the previous post. I still get goosebumps when I think about the flavor of this drug, yuk! At least the room was large and it was single. This is extremely important when you get night treatment, in order to get to sleep. That evening Nathália went to the shopping mall and brought Japanese noodles for dinner before my taste sense got too ruined. When she got into the floor she generated a lot of jealousy among nurses and assistants, who told her that it smelt so gooood!
There’s nothing else to tell about the rest. As I was in the hospital, my granny fell from the bed in the geriatric residence where she is looked after, and she broke her hip. The surgery went OK, but her dementia and the change of environment didn’t help to have a relaxed stay. Now she has already been discharged and things have returned to normal…
I want to thank Alexis and Cris for their visits and for the book. Next time we should freeze the moment with a picture! The reboot took a little bit longer this time, and I also had a lot of bone pain: knees, ribs, low back, etc. Anyway, this is what normally happens when you inject the growth factor during one week.
After the sixth cycle, I’d like to especially mention the following ICO nurses and assistants: María, Maica, Laura, Lucía, Karen, Paula, Sara, Sandra and Dr. Martín.
Doctors are extremely prudent when they make any statement, sometimes even too much. In the beginning, at half of the treatment I was going to be operated, at least that was what the surgeon who made the biopsy in Switzerland said – Dr. Cherix. At that moment nobody knew that my tumor was IV grade and that I had metastasized lungs. This fact completely changed the speech. When a tumor metastasizes it means that is has reached the blood or lymphatic flow and that it has spread through it. Ewing’s sarcoma loves going to the lungs. These tumor cells can hibernate and be unperceived by the chemotherapy. So far these cells cannot be detected or killed, because the chemotherapy only attacks high metabolic activity cells. This is the reason why it is so important the early detection of cancer, to avoid these cells to make that fatal leap.
But don’t get over dramatic. These hibernating cells are latent, in stand-by. That’s all I can say. Perhaps they wake up from this state someday and I get bothered or maybe not. I’d rather think that they continue sleeping and this is what I wish and want most. The surgery I would undergo isn’t easy at all because of the closeness of genitalia and of the injuries it could cause. The traumatologist –already at ICO, in Barcelona- mentioned that after the surgery I could end up as a lame person, impotent, unable to sit down or to contain the anus. And well, he also said that radiotherapy could have similar healing power without exposing myself to such risks. Of course, with this explanation, I had no more doubts!
So now, while I’m waiting to have all the diagnostic tests -bone scintigraphy, CT-scan, MRI, ecocardiography and PET-CT scan (positron)-, they have started the planning of radiotherapy. In order to plan it properly, I’ve had a contrastless CT-scan –also called simulation scan- and I’ve been tattooed 3 freckles: one on each hip and another on the backbone. These are permanent tattoos and will help in positioning myself on the stretcher always in the same manner. Anyway, although all of the planning has been made, it won’t be until they have the full set of diagnostic test results that they will confirm 100% the application of radiotherapy – what I told you about caution and prudence :S.
It will be around 26-30 sessions, on a daily basis, weekends off, to get to a maximum accumulated radiation dose of 40 Gy. The aim is to burn Ewing alive, now that he is weak and his size must have reduced thanks to the induction chemotherapy 🙂 We have the advantage that this SOAB is quite radiosensitive, so you can be sure that he’s gonna suffer. High energy UV photons will be focused on my tumor to transfer all their energy. It’s like holding a magnifying lens and focus an UV beam of light right onto my tumor. This technique is much less aggressive for the patient than chemotherapy since the secondary effects are just local ones. In order to get to the focal spot, some energy is transmitted to the adjacent tissue. This is an unwanted effect, but it’s unavoidable. Therefore, every day I should be irradiated from a different angle so that not much radiation is accumulated on the same non-target region. I’ll have to take a lot of care of my skin before and during the radiotherapy.
There exist proton-based techniques, and as protons have some mass, they can transfer their energy much more efficiently to the target zone, but we don’t have any center giving this therapy in Spain… Just when the tumor is close to the brain or to the spinal cord patients are transferred abroad, but there is a two-month waiting list… In my case, in particular, I don’t need such therapy. Bone isn’t radiosensitive so it won’t be affected by radiation. However, organs such as the bladder and the rectum are very radiosensitive. I was warned that close to the end of the therapy, in the last sessions, I could suffer from urine infection, cystitis -bladder inflammation- or diarrhea.
And what comes afterward?
The main advantage of radiotherapy is that while you are having it you avoid chemotherapy 🙂 The venom will be waiting for me when I’m done with the 26-30 sessions, and I’ll have 8 more 3-week cycles to eliminate any remaining tumoral residue, in short: a 6-month treatment. The marathon will continue still a little bit longer, but knowing that I’m not alone in this race, gives me wings.
A special wedding
Let me talk to you about a person I know. Lorenzo is an italian colleague from EPFL, my university in Switzerland. After finishing his PhD and some years dating Kristina, they resolved to marry some weeks ago. This happy story is very special to me because Lorenzo, when he got to know about my illness and that I collaborate with Alba Pérez Foundation, told me that they were gonna ask their relatives and friends to avoid giving wedding presents to them. Instead, they preferred them to make a donation to the foundation. And their wish has become true: about 40 donations have been internationally made thanks to Lorenzo’s and Kristina’s good willing. Thank you very much for your altruistic and exemplary gesture, when I knew it I was greatly moved. Grazie mille, belli! E tanti auguri per il vostro matrimonio!
If you’ve read this and still haven’t made a donation, don’t be late!
Solidary account ES40-2100-0638-66-0200191250
COLLABORATE (in Spanish): http://fundacionalbaperez.org/unete