Imagine

It is difficult to imagine situations  which are not happening to you. And it is difficult to relate several those non imaginable situations. And I have somehow several situations that are not imaginable for others, so how can I explain them how I am feeling if they asked me?

Several weeks ago I told my friends that my treatment side effects increased due to the surgery an the second treatment I was force to fix my tibia. One os this side effects was that I was throwing up. Throwing up is a common side effect in cancer treatments, also in immunotherapy, and nobody asked questions about that. I think, they thought it was not that bad. And in reality it was not that bad? was it?

The funny thing is if you relate how you vomit, where you usually vomit and a broken tibia.

The regular way to vomit, at least for me, is when I can figure out that i am going to vomit I can hurry up and run to the toilet or corner in the street, and put all the evil there. Usually on knees or a comfortable standing posture. Now imagine how could you do everything I just told with a broken tibia. I will describe it. First you notice something is wrong in you, you are going to throw up, FUCK! where is the crutch?!?!?!, you put one hand in you mouth to help stop all the puke, but you used you good hand to do that, and you cannot guide yourself in a crutch, since you need two, with you “bad” hand. So you change the crutch from one hand to other, to the good one and the bad hand help your mouth to stop the puke. In this movement half of the puke is in the floor. After this you hurry up to the toilet, being very cautious not to fall with the puke that already did scape from you. After some minutes (10 meters from my living room to the closest toilet) you arrive and throw everything to the bath because is easier to aim and you do not need to find a comfortable posture. After that you clean all the mess you did and take a pail for the future.

And more or less that was my first time throwing up with a broken tibia. There is always a first time for everything,  also a last time.

 

 

5 years knowing I have cancer

5 years ago I was told I have cancer. Here a little summary of this 5 years.

In this five years I had:

• 3 epileptic seizures
• 1 liver surgery to remove a 9cm tumour
• lost my gallbladder
• 1 kidney biopsy
• 1 kidney surgery to remove 3 tumours
• 2 kidney ablation surgeries to remove 3 tumours
• 5 MRI
• 3 EEG test
• infinite (>20) CT scans
• Immunotherapy treatment

I also:

• lost more than 50kg in several surgeries
• win around 40 kg after the surgeries
• eat at least 1 pizza and a beer per week
• spend only around a moth in hospitals
• lost only 2 months of work
• had 3 different jobs
• travel to more than 10 places
• start enjoying everything like I really want it
• volunteered in several non-profit societies
• …

Now I have:

• a tumour in my lung
• 2 tumours in my kidneys
• a PhD grant to research in cancer
• friends that help me fight the pessimistic myself
• 2 scars in the front and 4 in my back

I fought against:

• Hepatocarcinoma stage 1 survival rate around 50%
• Hepatocarcinoma stage 3 survival rate around 20%
• Hepatocarcinoma stage 4 survival rate less than 10%
• more than 5 physicians

I am glad:

• that cancer did teach me to enjoy live

 

 

 

When everything collapses

I was fine. I had some travels to different countries. I was able to drive myself to the treatment. I was able to go out in Saturday nights with my friends. I could do everything. I though that. Until my body did collapse.

Lets go back some time.

I was going to a conference in Sweden. Some days from Tuesday to Friday. I had treatment on Tuesday. But nothing unusual. I could change the day from Tuesday to Monday and everything would be solved. Stupid me. I made a mistake with the maths.

Each fourth dose I have an extra day for extra test. Usually the day before the dose day. This means, the fourth time I have to go to the hospital I need to go in two consecutive days. That Tuesday i my mind was suppose to be my third dose. But in reality it was my fourth. And since Sunday is not a working day, and it has to be consecutive days. I was forced to do both days in a unique day.

For this special day I went to the hospital 2 hours earlier and I finished 2 hours after regular time. But, when I go to the hospital I used to have lot of spare time. Waiting to results. This day the longest waiting time was 20 minutes.

I did good during the day and I was able to take the plane next morning. 6 hours journey, with 2 flights, total duration of the flights of 4 hours and a half.

I arrived to Sweden and at first I was feeling good. I went to have lunch with my colleagues, we had a tour in the city and had dinner. I spent 3 days there. From 8 to 17 in a room. We only move from the room for the lunch.

After the second day I started feeling more tired. With no appetite. With no desire to walk and discover the city. The problem was that I was with 2 colleagues, so I ended doing more stupid things. Walking a lot, beer at night… Nothing that could help to my tired body.

Last day I took my flight back to home. Same journey.

I arrived late. After several delays. In the airport my cousin and a friend were waiting to me. They took me to a bar to drink and celebrate my return. I took one beer and I went home. I was feeling really tired. I was really tired.

That night my body did collapse. My feeling was like if I had a flu. But my body temperature was normal, and no headache and no any “known” disease. I did not control properly my pulse, but it was feeling strange, but kind of normal. I was disorientated. And feeling very heavy. Every movement was hard to do. My ears were plugged. I could not listen very well. And my voice was very low. I was not able to talk in a regular volume. Pain was more noticeable, since I was not able to hold it.

After 4 days, I started to recover. In a week I was almost perfect again.

I told this to my physician, describing the situation as a jet lag with some bad luck, and she told me that for sure my body did collapse. Her explanation was that somehow I am holding everything in good shape  but when I am really tired and my body can not hold things, the expand and thinks like that can happen.

I told her, this is something we should research in, since I can not feel like dead every time I am not strong enough to feel myself alive.

 

 

 

 

 

Thoughts after a week trip to Italy

I am trying to find my place in the world. This is something we are all doing.

Our history is around 40k years from now. 40k years ago started the invasion of the man to the Earth. The Earth is millions of years old. Nobody knows the exact name or face of the best humans 10k years a.c.

Once I wanted to be eternal, forever. Do something that may change the curse of the humans and be remembered. But to do that we need to think in the future. Some thousands of years in the future.

We do have paintings in the cave from long time ago. What if that was the way that caveman wanted us to know about their best hunters? I think… we cannot make any difference between their message and a stick-man. And.. do you know who was the first man creating fire or the one who created an axe? Same will happen to our actual science. Then, how can we create a message to be remembered? IT’S IMPOSSIBLE. Our destiny is to be forgotten.

After expending almost a week alone in Italy, I was hopping to find my place in the world, my destiny. And it did. Somehow.

After a the trip I know that I prefer to drink a beer in a bar with nice views while having a pizza, than to be remembered forever. Do things that matter… for me.

I know my place is not where i am.

When I was alone in the world, i felt unchained. Like nothing was happening between me and my disease. I was free.

Now, thanks to the treatment I am home. I must fight the reality… I want to be able to find my end by myself and not by external powers.

I hope this will end before my patience ends.

I want to escape from here and find my real place away from where i am now. Away from everything comfortable I know.At the end, living with cancer did become something very comfortable for me.

I want to feel lost again, I want to feel uncomfortable… again.

And the most important thing… I want to be able to escape for more than 10 days. I want to escape forever.

Stupid decisions

I am eager at making bad decisions. I am not talking about bad decisions, which also are part of my life. I am talking about those decisions that seem to be a really good decisions now,  and over time you realize that the choices you made were not the proper ones. But, you did believe in the past you, and you follow the path since you still believe that you must believe in you. And that is too much believing in one thought. I call them in this chapter of my life the stupid decisions and I am going to tell you some of them, the ones that were forced by a situation with cancer.

The first one, was a decision made when I was diagnosed with cancer. The decision was to do only thing I really wanted to do during the disease, and try to avoid/skip the rest of the tasks I was forced to do and were not of my interest. At first, this decision can be very intelligent, clever, extraordinary. But… one of the thing I really hate is shopping, so this decision did include not to go shopping and buy any clothes. I did buy some clothes in this time, most of them underpants and socks. Nonetheless, today is the day I wear clothes from 10 years ago and I am very proud of it, but I also think that I should renew my closet soon…

The second choice I made was to not change my eating habits. Which I can summarize with “Pizza & Beer”. I was used to drink a lot of alcohol, and a liver cancer was not going to stop me…. maybe a little bit… but… when I was down, this thought of trying to come back to this lifestyle made me strong. Now with time I do not see much useful the pizza and the beer, I prefer other food and drinks. And if you hate a hangover think about a hangover with cancer, a liver cancer. Its was not, at least, funny. The say that aging is when you spend more money in foods that in drinks. I think I am aging, and in spite of this idea is in the bottom of my mind, I am trying to find a better way to happiness.

The last one I made, I made it today. April 12, 2016. I promised to one of my nurses that I will loss 20kg.

I am already regretting.

 

Sick. Sick. Sick. Sit. Eat.

Having cancer does not give you infinite health insurance. I mean having cancer does not protect you on having other regular diseases. With this I want to point that I have been sick a whole week.

I did not know what was the reason of my sickness,  it could be a virus in the office, it could be the regular flu, or any other disease. But I start feeling strange.

When I feel strange i mean this:

a) my digestive area converts the digestion to a sensation close to be in hell, increasing the pain and
b) hell is not something my body wants, so my other body areas try to avoid it, throwing everything they can out of my body from all my exit areas. With no success. They convert myself in a real vulcano-hell.

So I spend a week vomiting, with diarrhea, with a lot of pain and I could not sleep properly mainly because of the second (b) reason, so I was also tired.

Now I am good, and I had treatment today. Everything is okay. Blood analysis are stable, the tumors are smaller than the first day. The only problems for the physicians seems to be my weight. I think I am the only subject who is winning weight in the study. I  do not why, but usually this kind of treatment use to reduce the appetite, and sometimes remove it… I feel I have less appetite… but food is so marvelous… and we need to eat… so I can not say no to food and I eat even without appetite.

Eating too much did not help me also with the diarrhea and vomits, but makes you stronger… at the end you need to balance how much you need to eat and you are able to throw.

 

 

In my daily life

“Hello Cancer, how are you?”

“I had better days… ”

“Yep, I can see, you do not have a good face. How was the Liver? ”

“It was ok. But that was long time ago… I am travelling a lot, you know… I love being here and there… always moving… Staying in a unique place is kind of boring”

“Wasn’t you suppose to stay in the Liver?”

“Naaah. You know… in the Liver there is too much to drink… and one thing led to another and I ended discovering new areas I didn’t even knew they exist”

“Are you talking about both Kidneys?”

“Both?… You mean two?”

“Yes, two”

“Did I finish with both?”

“Yep! with both of them! was not enough with one? I Could life with one and you could have the other one. We could coexist… but you wanted to have it all”

“Hmmm… you seemed a little bit jealous…”

“I cannot see why… maybe because you almost killed me?”

“That’s the reason you ended up killing some parts of me?”

“Kill is a very bad word”

“They do not exist now, how do you call that?”

“Resection maybe?”

“Isn’t that he same?”

“Somehow…”

“Anyway… that parts are not with me any more and you are becoming stronger”

“Why do you think that? I am feeling weaker, and lonelier…”

“Your immune system is much higher now than before”

“That is not because of you! It is because of the Immunotherapy!”

“But you are receiving the Immunotherapy because of…?”

“Shut up!”

“That’s right. You are welcome”

“AAAAARGH!”

To be continued

 

 

I want also be able to quit

For cancer and similar diseases having support it is really important since there are some moments where a sick person cannot stand alone.

During my disease I had different people giving me support.

Usually this people cannot handle the pressure of the disease. They usually can follow my life in a period of time and then they end collapsing. They cannot handle all the news I give to them and all the things I want to share about my disease. Times goes by and the disease does not disappear. Sometimes it gets better and other time worse. good news are easy to handle not as bad news, which can be really bad. At the end they all end up telling me, please, to stop sharing with them all the news and my thought about my disease. Being the only relevant information for them knowing I am still alive.

Some of them disappear forever and other do offer other kind of punctual support, which is also appreciated.

I do not have close friends with cancer, I did friends in the hospital, but that is different, since being in the oncology area the strange thing is not to have cancer. So I do not know what is to have a friend with cancer and what are the feelings of it. Although I think It is not that difficult to support a friend with a chronic/terminal disease. You only need to be with him/her and you do not even have to suffer the disease and all the pain he/she might have. Plus you may help you friend to carry easier the disease.

Feeling supported make to the sick person stronger. And each time someone steps out or quits giving support make to the sick person more vulnerable.

When a sick person tells someone that has cancer, no one stays the same, they usually get closer or they step out and remove their self from your life. This last removal it is also good in a sense, since you know what people you can not ask for support to. I would like cancer could be fixed as easy as this people could quit or easier… Just by saying “I quit”.

To all who have been there. In my anger days, rare days… talking, grabbing a beer, coffee… And do still talk to me as nothing did happen. Thanks.

 

New year

Its been some days/weeks since we started the new year.

People usually make stupid promises  believing that they will do something to change their lives. I do not do that kind of things. But when I choose to begin the Immunotherapy I did not expect that the treatment would change my live so much.

At the end I was used to treatments that did not take many time from me. Just some few days. But they were not efficient enough to fix me. Only to maintain me alive and strong.

Now with the Immunotherapy everything have changed. I am tied to a treatment, my feeling nowadays are like a leashed dog. The dog can move only where the rope arrives. In my case the rope is as large as the world, but once per two week that rope force me to go to the hospital. Being the rope as short as the real dogs rope.

This also makes me think that at least I am treated better than the dogs, since in my worst case I am in the best scenario of the dog, so I am not that bad.

Other thing that changed with the Immunotherapy is that it seems that is working and my cancer or tumors are decreasing. But being coming out of the disease make me think about different things. I have been my last 5 years sick with cancer. And what would it be to live without it? I cannot imagine my life without cancer… i cannot imagine my life without MY CANCER.

Sometimes I feel I do not want to end this stage of my life. I want to be always like that, I am kind of liking it. The worst part is that if I continue with this life I wont last too much.

Summarizing, this year wishes are to continue like previous years in the same stage, becoming better with the Immunotherapy and hoping to end this nightmare as soon as possible. After that I will figure out what to do with my life, at the end it would not be that bad…

 

 

 

Its Christmas time

I spent the last two Christmas in hospitals for different reason. Truly, I had only one reason but because different consequences.

This year I thought it could be different. At the first half part of the year, before I applied to start Immunotherapy, it seemed that it could really happen. That this time I could have Christmas time far from hospitals. But after July I realized that this year would not be possible. I would spend another year close to a hospital.

But this year fortunately would be different I was going to spend only a morning in the hospital. Comparing to spend some period in bed like I was forced to be some years ago this year it would be not to be in a hospital at all. I already had to go once to get one dose some days ago, on the 23rd which is a really nice day, it is not close to any festivity. Some friends told me that I was very lucky that this year even I had to go to the hospital the day I was dated was not a bad day. But I think I am not that lucky… and on the 23rd at the end of the day when the physicians dates me to the next dose, he told me that my next appointment was on the January 5th, the day when the three wise men come to give the present to the children.

The nurses told me that the three wise men used to go to the hospital to visit the sick and give some presents, so maybe I will be lucky and I will meet the three wise men and I can ask give my desire list.

Who knows, maybe they can fix me…