Based on a true story (III – final part)

And the show goes on. In this LONG post I’m gonna tell you some facts which are not directly related to my illness, but I have to tell you about them here so that you can have an idea about what we have gone through these lasts months. More of the same. Maybe the mood has slightly changed with respect to the rest of the blog, but that’s the ugly truth. All of the names herein are real, as well as the opinions that I expose. It’s up to you, dear reader, to make the appropriated conclusions about what happened.

On Saturday October 15, in Barcelona, we had arranged a small birthday party at my parents-in-law’s place. It was Nathália who persuaded me to come back to Spain that weekend, before the incident at Dr. Blanc’s consultation. The atmosphere was perfect: we were so happy surrounded by our friends and family, that in the toast after blowing the candles I breathed deeply and.. bombs away! I announced that Nathália was 7-week pregnant. Normally I’m reticent to announce these kind of things before the 3 first months, but sh*t, we were having a great time that evening and probably I would not see all that people together again in a while, so I couldn’t resist the temptation.

Nathália had bled since she knew she was pregnant -on September 29, I was in Berlin at a conference- and couldn’t give me the desired surprise, not the way she had imagined. The d*mn doctor that assisted her on the phone scared her enormously by saying that she had to go immediately to the hospital, without eating or drinking, because most likely she was going to be operated urgently and her life was on risk. She was forced to call me at 7 am on September 30 -a couple of hours before my presentation in the conference-, to let me know that I was going to become father, but that she was bleeding and was afraid that it was an ectopic pregnancy. I calmed her down as much as I could, but I felt totally powerless. In the end it was nothing, and the doctors at the hospital, apart from recommending her to rest for some days, were asking themselves how come the doctor at the phone could have said what he said in that way. The damage was already done.

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My father doing one of his favourite activities, perharps as much as the tasting afterwards. My brother- and sister-in-law discussing with Agustín while my father-in-law Edson is controlling soft drinks.
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One minute before the announcement. I don’t regret anything.

Back to the birthday party, when the last guests had left, around 10 pm, Nathália came to me crying and told me she had bled more seriously. We went as fast as possible to Quirón clinic and there we were told that the resolution of the ultrasound equipment at emergencies was not enough to see the fetus’ heart activity and that we had to wait one week and go back to the gynecologist. We were fed up of waiting for everything, so we decided to go to a women’s and child’s hospital -Sant Joan de Déu-. After a long wait we were assisted, and were told that the fetus’ heart rate was lower than the normal one. The images of our “pixelito” from the previous week -October 7-, with its heart beating at full throttle, had come to my mind. When I saw it for the first time, it was so small that was hardly resolved by the ultrasonography. This is why I lovely called it “pixelito” – little pixel-. We asked the gynecologist if it was a risk to travel the following day -we were driving back to Switzerland with my parents-, and she replied that if the fetus was viable it was the same travelling by car, ship, plane or balloon. Life was there, but she was not too optimistic and let us know her thoughts. We got to my parents’ place at 3 am. We were completely devastated.

The following day we got into the car around 11:30 am: you can guess how. Nathália suffered from abdominal pain all the trip long, but our “pixelito” didn’t want to say goodbye in the restroom of a random gas station. It was so brave that waited until we got to Neuchâtel around 11 pm, in our bathroom. We went quickly to the emergencies of Hôpital Pourtalès, and there they confirmed what we already knew: Nathália had had a miscarriage. It was October 16 and since then we have a little angel called “pixelito” in heaven, that watches over Nathália and me.

On Tuesday October 18, as many other days, I brought a hot water bottle to the workplace. I refilled it every hour and a half with the kettle of the open space. This bottle, together with ibuprofen pills, were the only effective things against pain in the ass. My work implies being sat many hours in front of the computer, so that hot water bottle had become my everyday partner.

That afternoon I got home earlier than usual and we visited the gynecologist. That psychological consultation with her, was in fact very good for Nathália. As it was an spectacular afternoon and my parents were at home, we decided to go make the most of that moment and went to the “Rock of the Ermitage” -an emblematic spot in Neuchâtel with impressive views-. There we ate a “pastel de nata” from the portuguese bakery Bessa, while enjoying the sunset. During a few hours, we managed to forget our problems. When we got back home, I realized I had a missed call and an sms from my great friend Dr. Blanc. I sensed trouble brewing, but didn’t want to waste time in calling him, I could do that the next day. So that night I went to bed knowing that something was going on, but I didn’t dedicate a single second to think about it. It wasn’t worth it.

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My parents at the viewpoint of the rock of l’Ermitage, at only 10 minutes walk from our apartment in Neuchâtel. When the weather is good, the views from up there are unbeatable.

The following day, Wednesday October 19, I called Dr. Blanc and he made me drop my jaw. He told me that his colleague and trusted radiologist, Prof. Theumann, had called him and that, after checking the images, he suspected of a tumor. To avoid being in doubt, I was programmed a bone biopsy by needle in a private clinic in Lausanne for Friday that week. The previous day I was comforting my wife to encourage her, and now it was her who comforted me.

And that happened very quickly: we got to the clinic Bois-Cerf on Friday 21 at 7 am and around 9 am I entered the operating room. Despite the fact that I was given some morphine and midazolam -a kind of sedative-, that was the most painful experience of my whole life. When I was pushed forward into the CT scanner it was a complete relief. However, some seconds after, the stretcher was moved back and the nightmare started again. Prof. Nicolas Theumann didn’t say a word during the whole procedure, not even to ask me how I was feeling. I sincerely believe it’s not blood the liquid flowing through his veins, that man should have cables and high precision Swiss microtechnology inside. While he was giving the anesthetic shots right in the bone I cried like a baby. If I had been given the chance to grade my pain from 1 to 10, the score might have been 11 or 12. Anyway, since nobody asked me anything when I cried, I assumed that they should be accustomed to save anesthetics, which must be extremely in Helvetia. Those who know me well know that I do not complain of pain usually. In karate, during many years, I’ve learned that pain is something psychological. Even when we got punched in the abs, or hit in the shinbone with the shinai -japanese bamboo sword-. Unfortunately, my mind was not ready for the trauma caused by that biopsy.

Once the agony was finished, I was moved back to the room and, in spite of pain, I could finally relax a bit and have breakfast with my wife and parents. My ass hurt so much that I was given a pill of Targin –Oxycodone / naloxone, a moderately potent opioid analgesic also considered a narcotic-, and then I reached Nirvana. No pain for a while: what a pleasant relief. Nevertheless, as my father usually says, damage was already done.

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Photo shots of my experience at Bois-Cerf clinic (Lausanne): (up) before the operation, dressed in Celta de Vigo’s outfit, (center) at Nirvana state while holding a jam toast -many people thought it was the biopsy sample xD-, and (down) still at Nirvana state, double thumbs up with my parents.

After some hours I was taken again to the radiology room to have a thoracoabdominopelvic CT scan. The secretary, Ms. Cléopatre von Roten, told us to pass by Prof. Theumann’s office before leaving the clinic. There we went my wife, my mother and I. And there, standing in his office, was where he announced that I probably had a tumor, maybe an osteosarcoma or a chondroblastoma, and the histopathologic analysis of the bone cylinder (3 cm length x 2 mm radius) they had extracted might show whether it was one or another. Nathália broke in tears and my mother, despite not understanding a word in French, realized that something wasn’t OK and also started crying. I asked several things and, once outside of his office, when I explained to my mother the discussion we had had with the robot, sorry with Prof. Theumann :p, she said something I will never forget:

-Son, I wish I could exchange myself by you.
-Don’t say that, mom. This is a test I’ve been chosen for. It’s not fair that you say so. We’ll get out of this. All together.

I had to wait from 7 to 10 days until having the biopsy results and Prof. Theumann and his team would be on holidays the whole week starting October 24th. What an opportunism! My parents had already traveled back to Spain that Monday morning. Every day I opened my mail box as if there were a bomb inside. There were always invoices for medical care arriving. And on Wednesday the 26, when I got back home at noon my heart almost stops. A letter had arrived from the pathology lab. I didn’t understand much from what was written in the report, but apparently the tests for cancer they had done were negative. Therefore, they had sent my sample to a bone tumor reference center in Basel, in order to have a second analysis. That Friday, thanks to the long weekend in Spain, Nathália’s parents, her brother Phil and our sister-in-law Sara came home. The following day it was Youi and Gem’s turn. Thereby, even though Nathália was working that weekend, I wasn’t alone a single moment. Thank you guys!

On Monday the 31 I had an appointment with an oncologist surgeon from Lausanne’s university hospital CHUV, Dr. Cherix. The results from Basel hadn’t arrived yet and, during the morning, I had to call the lab (ARGOTlab) that had sent my sample away. I was told to wait, despite having the appointment that same day. I thanked their “kind” manners and hung the phone. Then I called Prof. Theumann’s office to see if they had received something. It seemed that Ms. von Roten wasn’t aware of anything because of holidays, and told me that they couldn’t do anything if I had already talked to the lab employees. Olé and thanks again! So I googled the lab in Basel to find a phone number. And without German knowledge, I managed to find the data I needed to Knochentumor-Referenzzentrum of the Universitätsspital in Basel.

Their manners were exquisite, seriously speaking: their secretary passed me immediately with Prof. Baumhoer, who explained all that had happened. The results were not conclusive, it was required to make a second biopsy to obtain more quantity of bone tissue and be able of performing other tests. Ouch, my brain thought: biopsy agony once again… But if it was required to have the diagnosis, there I went! Prof. Baumhoer also told me that they had sent my IRM images to an hospital in Duisburg (Germany) and for the first time I heard the name of Ewing’s sarcoma as a candidate.

In the afternoon, I had the appointment with Dr. Cherix at CHUV. He explained to us that a percentage of needle biopsies must be repeated, since they cannot extract enough tissue valid for analysis. The surgical biopsy is avoided at first because it’s a more complex process that can imply complications for the patient. Besides that, it required general anesthetic. He also mentioned that it was compulsory to make this biopsy to have the diagnosis and told us about the long term physical damage that that surgery may unchain. Dr. Cherix treated us excellently, and I let him know it:

-You are the first human kind I’ve found in this long process, thank you very much.

Moreover, the CT scan I was made after the biopsy had revealed some millimeter-size nodules in the lungs. He talked about unspecific injuries, a CT scan of 9 out of 10 random people would reveal similar injuries: calcifications, scars from bronchitis when I was a child, etc. I downplayed it. Once outside of his examination room, in front of the cantonal bank of Vaud’s office, I told my parents-in-law and friends what we had just been told, and when I reached the part of possible “long term physical damage” caused by the surgery, I cried while I was hugging my mother-in-law and my friend Youi. The following Thursday I would be admitted and on Friday, early in the morning, I would be operated. We said goodbye to our friends, Nathália’s parents, brother, and sister-in-law, and got ready to face, once again alone, another waiting week.

On Thursday November 3 I wrote an email to some of my friends. Literally I wrote what follows:

Dear all,

As many of you already know, I’m not going through the best period in my life.

In a few words, I have a terrible pain in one leg since some months ago and after fighting with many doctors and specialists I still do not have a diagnosis.

The facts are that there is something in the lower part of my pelvis, in the right ischium. The bone seems necrotic and the biopsy I was made by needle 11 days ago does is not conclusive for diagnosing a tumor. I have 50% chances of having something else than this, and next Thursday I will have a second biopsy, this time fully sedated and in a surgical procedure.

After 10-20 days from Thursday, the doctors will have a diagnosis (I hope) and I will put a name to what I have to fight against in the following months.

I prefer to share this with you rather than keeping it inside, this is fully my choice. I have already flipped the coin and I just need now to get the good vibes coming from all of you to get the good result. Please, help me in tipping the scale in my favor but, as I may have told you already, treat me as usual. I may not participate in all the activities and meetings I am usually involved into, but I will try my best to stay the same.

With my kindest regards,

Dani

Some hours later I was admitted at CHUV, and was surprised by the fact that I had been assigned a two-bed room. Let me explain that to you: our medical insurance only covers hospitalization in a six-bed room (common division). If you want to have a room like the one I had been assigned (semi-private) or a single one (private), you must pay a huge amount of money plus the money you already pay. Because in Switzerland there’s no social insurance like the one we have in Spain. When I asked the nurse to check if the room was right -in order not to pay for their mistake-, she said that I was simply lucky 🙂 What we didn’t manage to achieve, though, was that Nathália could stay to sleep by my side in an armchair. She had to go back to Neuchâtel: a 70 km lonely trip knowing that the following day she couldn’t see me until 1 pm. Rules in Switzerland are unbreakable and exceptions are not allowed, hurrah for the flexibility! I could choose between general or epidural anesthetic, and took the general one. After the first biopsy I don’t trust anyone in the hospital. A doctor also passed by to mark my leg, so that they don’t operate the wrong side, ‘lol

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The treasure island is there!

And when I opened my eyes I was already in the recovery room. Nathália waited outside for a while, but she wasn’t allowed to see me until I was brought back to my room. My parents arrived later from Spain, in a flash road trip. The surgery went perfectly and they removed 2 cubic cm of bone from the ischion. The surgeon, Dr. Cherix, had given me some hope: he could perhaps have a diagnosis the same day of the surgery. But when Dr. Cherix passed by to see me, he called the bug as tumor. We asked him if he could 100% be sure that it was a tumor and he replied that it was still unknown. However, a few sentences later he called it again as tumor. Despite the fact that the wound had been open for some minutes -while I was sleeping-, the pathologist hadn’t succeeded to specify anything at the lab. So I had to wait 10-20 extra days. Nothing new.

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Cheering right after the surgery, hahaha
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Here I am with my brand new partners, which will follow me up to as of today wherever I go.

When we translated the doctor’s speech to my mother, she fainted and I couldn’t avoid crying. I didn’t want her to suffer anymore. When she was revived I told her that that was the right moment for everybody to cry, since I didn’t want to see them cry for me again. I needed their strength, the one coming from everybody, and seeing them crying was not helping me at all. So far they haven’t done it again, at least in front of me, and I thank them for that.

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With such a father no laughing therapy is needed, hahaha

I’d like to thank here Barbara, a French stretcher-bearer at CHUV, one of the rare people at Swiss hospitals that leave a mark because of their human manners. When I was discharged to home, on Saturday November 5, I wrote the following email:

Dear friends and colleagues,

Thank you very much for all the support messages I’ve received during these days. It may seem nothing, but you managed to make me smile, which I really appreciate.

Yesterday’s surgery went OK and, as we say in Spanish, what is left now is to put “cojones” and look forward to having these results. They have removed quite enough bone which has been replaced by cement (I hope it’s not the 2-compound Epoxy resin 😉 ). Therefore, I will have to use crutches for a while and avoid leaning or putting weight on that leg, because the remaining bone is quite fragile now. Although initially I did not want to, I’ll be a couple of weeks out of the game, staying at home and waiting for further news.

Even though doctors talk openly about a tumor, as a stubborn scientist, I won’t believe it until it is proven. In any case my parents and karate master have taught me to never let anybody twist my arm and surrender. So whatever it is, good or bad, I’ll put all my effort in recovering and don’t letting it change my humor and the way I see life.

I hope that my next message will be definitive in terms of the diagnosis. Keep your fingers crossed for me.

See you soon,

Dani

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My secondary 20 cm ass crack. The primary one has been cropped from the original picture  for intimacy reasons xD

And well, we waited another week more and on Tuesday November 15 we had the appointment with Dr. Cherix in the oncology department. He was accompanied by Dr. Digklia, and just after we sat down he said an idiom in French that I didn’t get. Then, he said in other words if I wanted him to get to point. I said to him that of course I wanted, what is more: we were there for that. He said that the anatomopathological tests had revealed that I had a cancer: an Ewing’s sarcoma. I maintained my composure at all times. Dr. Cherix told us that 3 out of 4 patients overcome this illness and also set an appointment within 2 days to allow me breath and assimilate what he had just told me. From then on, Dr. Digklia would be the treating physician. I wouldn’t see Dr. Cherix until the surgery at mid-treatment. Although I had many many questions I had to wait still a little bit more. I felt relief, though. I was waiting for something clear for a very long time, and finally I had the answer.

They told me to go to a different room for a blood test. The nurse in charge, who was very attentive, asked me about my diagnosis. On that moment I couldn’t hold tears anymore, so I explained the whole thing in a summarized way. She was a total stranger to me, but she listened to me carefully, held my hand, offered me kleenex… she showed me her humanity almost without knowing my name. When I asked her if the treatment had to be done in Switzerland or, instead, if I could go back to Spain, she brought me the business card of a social assistant specialized in cancer, and made everything in her hands to help us. When she walked with me back to the waiting room, she hugged Nathália and my mother. She even gave me her business card: thank you very much, Ms. Sophie Lavenat. You are an exemplary oncology nurse, apart from being a good person.

Once we arrived at home, after the obligatory 70 km trip, I started writing. I was day 0 -zero- of my illness, from then on I only count days until total recovery. A bit more than 9 months had already passed since I had the symptoms for the first time, and 8 since I went to the first doctor. I needed a way-out so the best I could do then was writing this e-mail:

Dear friend and/or colleague,

First of all, this is NOT SPAM J I’d like to send you these lines to thank you for having thought about me and having spent a few minutes to answer my previous email or for having contacted me some way. You don’t know how much I’ve appreciated your message or call, even if it was short. Many thanks from the bottom of my heart. Whether you want it or not, you are or have been part of my life since long time ago, or in one moment or another, and this is the reason why you are getting this email today.

Today, November 15, I’ve had an appointment with my fate in the university hospital of Lausanne (CHUV). The doctor that made the surgery 10 days ago went straight to the point with the results, and I thank him for that. He said that I’m sick, terribly sick. I suffer an aggressive form of cancer called Ewing’s sarcoma. So far I had only heard about that name in the 90s NY Knicks games. 3 out of 4 patients overcome this disease after treatment. I have no more liquid left inside me nor strength left in my eyes to cry more. Today it must be like this, tomorrow I’ll get up stronger than today . I don’t suffer of pain anymore, I just have a pair of crutches whom will be my partners still for a while.

This piece of news, although not being a total surprise, has taken me down tragically. As you may imagine, this succession of days is extremely bizarre: I can’t focus or do anything because of the lack of mobility. Hopefully doctors have managed to find the diagnostics I was waiting for more than 2 months. This makes me feel calm. All my dreams, challenges and objectives must be put off a couple of years: the PhD, paternity, the handstand, 3rd Dan, etc. But they will become true someday, be sure about that.

I haven’t been informed in detail yet because of today’s shock. In principle, from November 28 I’ll be taking chemotherapy sessions during 4 long months. Later I’ll have a surgery again and finally more chemotherapy until completing a whole year. The fact of thinking about it makes me shivers and goose bumps, but there’s no way back now. I’m scared and don’t want to hide it, but I’ve resolved to follow the best of all the possible treatments: positivism. Your thoughts, although coming from far away, together with my willingness to recover are the best medicine against this shit.

On the other hand, I haven’t thought yet if I’ll want to be treated in Switzerland or if I’ll get back to Spain for that. I still have to think about all of it, about what would be the best alternative.

Please forgive if this message is not too individual; I’d rather tell you all this via other means than email, but unfortunately right now I have no choice. I’ll fight for those I love the most in my life (my wife and my family) and for being maximally happy.

With my best regards, Osu,

Dani

The following day, in the evening, I was having a coffee at Neuchâtel’s train station with Luciano -my CrossFit coach-, and with my partners Héctor, Gilles and Johny, when my wife called me. She wanted to discuss about something important with me, but I’m not gonna talk about this issue in this post, cause it has to do with the decision I took of coming back to Spain.

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With my “Movember” moustache waiting for my appointment at the oncology dpt. of CHUV (Lausanne)

On Thursday 17 November, we went back to the hospital for the remaining explanations about the chemotherapy process. It was a young doctor from Dr. Diglkia’s team who saw us. I can’t remember her name, since this performance has plenty of actors/actresses. The secondary ones are just secondary. We told her the whole story again and also let her know my decision. After changing room, a new doctor joined us: Dr. Michael Montemurro. He was very bizarre at first sight and apparently was the definitive treating physician in the ball. From the very beginning Nathália didn’t like him, especially when he enumerated the steps to follow by using Greek alphabet characters. She found this attitude quite pretentious. That didn’t disturb me at all, but it was the following discussion that sank us like a stone:

-Do you want to have kids? -the doctor inquired in low voice-.
-Of course yes! -we replied in unison-.
-OK. Do you know the difference between infertility and impotency? -he asked looking at me-.
-Yes, I do -I answered-.
-After this treatment you will become infertile. This is why we are doing the sperm collection.
-Yes, I already knew that. I had already asked about it to Dr. Cherix.
-And you should get used to the idea that maybe you don’t see your kids come into the world. Or see them growing up.

That nasty and totally subjective comment fell on us like a bomb. After that, he said that the rate of survival for that illness was lower than 50%, perhaps around 40%, and Nathália told him off that Dr. Cherix had said 75%. Dr. Montemurro replied that surgeons are too optimistic, and that he preferred being more pessimistic so that he can be wrong and then both of us can be happy. We don’t need anyone to be optimistic or pessimistic for us. Thank God, we have superior studies and know how to distinguish between what has sense and what is bullsh*t. There’s perhaps some other ill people in the world that are not that lucky as we are, and such a comment could wallow them in misery. And the worst of all: cancer feeds on that. The statistics are out there, but if we wanted a future prediction, we’d better go visit a futurologist.

After that consultation we reasserted my decision. If I wanted to dig my thumb I only had to stay in Switzerland to have him as treating doctor. A thousand times thanks, Dr. Cristina, for helping us in making the bureaucracy easier and being able to start the treatment just one week after the starting date in Switzerland.

On Friday November 18 I informed my colleagues and my boss about my decision. It was a magic moment, something beautiful that I’ll never forget. And I say it from the bottom of my heart, as the words I dedicated to each one present in the open space. In the afternoon I had to go again to Lausanne, that time for a CT scan and a heart ultrasonography, the last round of tests before going back to Spain. Nathália should work that day, so I went accompanied by my parents. Dr. Montemurro wanted me to pass by his office after the CT scan, but I went there just by myself. Although he told me that one of the nodules had grown and that it meant a metastasis in the lung, I saw the images together with him and I didn’t think that the their resolution was enough to reach that conclusion. I have to admit that he was right, since then PET/CT scan I was made in Spain confirmed his diagnosis, but back there I didn’t care at all.

Later that day Andrea and Bernat arrived in Neuchâtel, a couple of friends that we usually meet in some remote places: Las Vegas, Los Angeles or Paris. Thanks for coming and also for your tiramisù -one of my favorite desserts, maybe #1-.

Saturday 19th it was the farewell turn of my boss and his wife, Hans Peter and Elisabeth (thanks for sharing your story and for showing Nathália how to be a lioness), of Angélique, Beto y and their little princess Paola (thanks for the soursop tree leafs, and for the tiny sneaker), of my colleagues and of Marie too, who came specifically from Spiez (about one hour a half away from Neuchâtel by train). Thank you everybody for the picture! And thanks to Sara for arranging the dinner!

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With my little princess Paola, the most beautiful thing in Switzerland, although she mistrust uncle Dani
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The last -and sunny- morning accompanied by our friends Andrea and Bernat

And my last day in Switzerland arrived after that dinner. After Sunday’s mass, we bought some portuguese “pastéis de nata”, these ones we love that much, and sat down with Andrea y Bernat on the stone stands in front of the lake. We enjoyed the exceptionally sunny morning that November 20. It is wonderful to have this memory of my beloved Neuchâtel, and not the one of fog, cold and rain, as it is usual on that dates. I couldn’t even imagine what was going on at Barcelona’s airport. As I told my colleagues, I’ll be one year in the time chamber. It will be a tough training, but once I’m back, I’ll be stronger and more prepared than ever, like super-saiyans.

I want to emphasize that I don’t resent any of the people that I have mentioned in this post, but you must understand that I needed to write this to get over the sadness I had inside. I wish nobody else had to go through something similar.

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One thought on “Based on a true story (III – final part)

  1. Dear Dani, I believe in you as a stubborn scientist, and you will have enough stubborn courage to go over this difficult time. We are looking forward to your coming back, a fresh and sunny Dani as we all know! We cross our fingers for you!!! Yun

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