About life and how I live it. 

Life is complicated, when it kicks me it can be very cruel, insane and merciless, but then it’s also so enjoyable and sweet, and this makes me think a lot. The last few months have been rather good. It will soon be eight months without visiting the ER. They already know me there! I spent a little more than a year going pretty frequently, always for the same reason, dehydration. Electrolytes would go low after a night with diarrhea, and when my hands started tingling and then cramping, it was time to go. I tried to brave it a number of times, delaying the short hop to my hospital until it was obvious that I wouldn’t be improving by myself. A few times I just admitted things were not right and headed there well in advance of the meanest symptoms. It was much better to go there early, because I wouldn’t be with the horrible cramps, it was getting hooked up to an IV line, recovering liquids and electrolytes, spending the night and coming back home the next morning or one day after. But life is a lot better when we don’t require hospital care. I will be forty this year, but I feel like I am the same I have been since I was twenty. Yes, I am the same guy, but my health has changed a lot. I say I have aged twenty years in the past two. Back when I was seventeen or so, I used to think everybody should be able to run 5 km any day of his life. I have now already been through quite so many days where I can’t even walk around the block, or doing so has been very hard. Or thinking about walking around the block by myself is just ridiculous, what am I going to do if I need help when I’m halfway around the block? But I have made an effort to stay sane and understand the situation. 
These days I am happy. Not only I haven’t seen the ER in months, but I also feel better. I have had a little more freedom with foods and I am using less medicines. At work I am able to handle more work, and I was given the quarterly award for excellence. I don’t feel I am excellent yet, but I feel that I do as much as I can, and I feel happy that my efforts are recognized. I intend to improve. My company and managers have supported me a lot through all this, and it just became personal, I now have an important commitment with my job and my people at work. 

Not everything has been sweet. A month or two ago my oncologist found me anemic once again. He prescribed a ton of iron through the vein and asked me to have a colonoscopy and a gastroscopy to look for a reason for my anemia. Oncologists look for cancer, and us patients want to be told that we’re ok and that there’s no cancer. That’s the deal, otherwise we are not happy. That night I considered all options: being healthy, cancer returning, finding a new different cancer, finding a terminal cancer, having to face a very harsh treatment and so on. 

As if having one cancer patient in the family were not enough, it was in those days that my dad told me he had had a problem in his throat for a while, and I asked him to go see the doctor. Things didn’t go as we wanted. I was heartbroken when he told me the pathology report said it was a tumor. That moment I felt like I had a watermelon stuck in my throat. How was it possible that my dad could be having to have to go through this? My best friend ever, my guidance, my source of wisdom, a man able to bring me into reason, my dad, with whom I share our own sense of humor and with whom I agree on most things… How could it be possible that anything could be attempting against his life?!

As always, he was wiser, and he was able to restore a nice amount of calm. He was transplanted about 36 years ago, and he told me that I shouldn’t be upset about this, it’s already been almost 40 extra years we have had and that we were not going to have. He was right. Transplanted people don’t live this long usually, but still, it is unfair. I get watery eyes as I write all this. I need to find a way to understand life, to understand what happened to me , to understand what happens to my dad and to understand what is yet to happen to me. I have been thinking a lot about this and I think I have made progress. 
I have been thinking a lot about my childhood with my dad, about how great a father he has always been and about what was daily life when we lived together. These days I call more, I visit more (which to me is still difficult, and since I came back to my home from my recovery days in his house, I don’t visit as often as I used to before the surgeries, but I really have had a tough time, I spend a lot of my time lying down waiting to feel better) and I email more. I have emailed him about how we lived together, about how life was when I was a kid and about how good those times were. The truth is that those are great memories in my mind. I think back to those days and I feel happy about how we lived them. I hear the music we played those days and I smell what he was cooking for lunch or dinner, or feel how I drifted off to sleep in my earliest childhood. I remember the books I read, the books we used to buy every year in the book fair. It has been a good life together and I feel rather happy. These days I am the one who buys the books or the toys. He still buys books, but I often ask him if he has books in mind, and I get those for him, and get some for myself. I buy model boats, cars and planes for him, for me and for my wife too. Life is about sharing. Money, properties and wealth are good, but when life ends, the only thing we take with us is the richness of the soul that we acquired during our lifetime. Our loved ones that remain alive after our parting will have the memories of the good times we lived together and the good things we did to them. We will leave satisfied about the memories we are leaving them and about the knowledge we acquired during our life. We will be happy to have live an honest life to have read the books we read, to have played the music we played and listened to the music we enjoyed. We will be happy to have spent our free time doing the things we liked and that contributed to build our wisdom, our personality and the satisfaction of having done something right. We will be happy to have cooked and shared the meals we cooked, because cooking is a social act and an act of love, and in this I am very happy and proud that I cook a lot for my wife, always trying to please her and surprise her, and of course she likes that. 

About life, when in the context of a serious illness, I have become convinced that quality is a lot more important than quantity, and as much as I have chosen to follow this path, I want to be brave and able to choose the same for my loved ones if I ever have to do it. I feel confident that when the times comes, I will be wise enough to be able to understand my situation and choose to live my last days as comfortably as possible and not pursue a stubborn dream of long life when not possible and suffer while modern medicine extends my days a little while making me miserable. We always seem to try to hold to dear life even when it’s no longer possible or reasonable, and this is not a good idea. 

What is a good idea is to be prepared in a way that if we die, we can think, “hey, life was good and I really didn’t leave a lot of things undone!” To this end there are things we can do, and the most important one is not to leave a single “I love you” without being said and shown. I try to cook for my wife as much as I can. When she leaves early to teach her classes I always try to prepare her a good breakfast and pack everything in her lunchbox. I like to cook different things so that there’s variety and surprise, and it’s always a good experience. I send her hot coffee with hot milk in her green thermo that keeps temperatures for hours. I pack her a main course, some veggies, some cookies to go with her coffee and yoghurt. This is one way I tell my wife that I love her. Of course she hears it a lot, but all couples do, from the newest found love to those who fight each other hard and there can’t be much truth in the common phrase. I try to find ways to tell her. Then if I’m gone, she will remember me as the loving husband I tried to be. I tell my dad that I love him, and when I see him I always give him a hug and I kiss him on the cheek. I want him to know very clearly that I love him and how good a dad he has always been. If I’m gone he will remember not only his kid that he always loved, but how I loved him too. It’s much easier to tell a wife that we love her than a dad, and then we have to do the same with everybody important to us in our life. We have to show appreciation to everybody we appreciate: friends, family, coworkers. This is the only way to leave and feel satisfied, and not feel we left things without saying. I recently had my two work colleagues in the country (hey, we work a large territory and it’s only three of us in the country!) come for lunch. We had a great time. One of them cooked dessert and brought it. I had cold beer to take care of the worst thirst that has been ever felt. The other guy brought his family: wife and sons. We had a great time together and I think there was even an impact in our teamwork, which is very good too but wasn’t my main focus. My best friend, he has been very close through all my health adventure, and we’ve just been so close our whole life since we were three or four years old. We call each other brother, not always, but when circumstances are difficult, in this case for me, because he has the health he should have at our age. 

Another thing that has to be done is, I was thinking that our time alive can be thought like when we have an amount of money and we must decide how to spend it. The same with life. In the end we must be happy with how we spent our time alive. Who would be happy having spent their time watching TV? Not me. I don’t watch it. We have a screen here, but we watch movies we choose. We don’t watch any TV at all. I stopped watching it about ten years ago and now I even feel uncomfortable the very few times I have tried (like once in the hospital). I try to read as much as I can. It isn’t much, because I end up spending a lot of time lying on my right side and reading isn’t good like that, it’s possible but it’s not comfortable. But I still buy more and more books and one day I will read them all. I try to play music. I have been playing harmonica for a long time and I recently started playing accordion again (I used to play a little when I was a kid, but eventually chose to have the whole afternoon to go out and play). I bought my arduino and my raspberry pi, and I have built a few circuits. I had one that turned some lights on and off in the house, and I started playing with the camera, connecting to it from my phone and seeing the Christmas tree in the living room. I was following a programming class online (recorded), but since sitting in front of a desk for an hour beyond the time I spend at work was a little difficult, I had to stop. I will return to that one day. I am putting together a few model airplanes, cars and boats. My progress is slow, but I keep building when I can. 

All those activities are important to me, I will be happy I spent the time on them and I will feel satisfied and accomplished. In that sense I am ready, but believe me, I’m not in any hurry. We can wait sixty years. I don’t think I will be one hundred, but I would like to be around for some more decades. I like the warmth of the sun, the smell of rain, the taste of the foods I can eat… I had oatmeal this morning and my tummy is twisting and turning like crazy. I am hoping I don’t have to go to the hospital, but if I need it, I will go. And preparing for these tough times I just finished giving my wife full control of my bank accounts. It seems I am more interested in doing that than she is, I almost had to force her, but it’s done for the most immediate part. She has to be able to run the household if I’m locked in a hospital or just finally gone. 

Let’s just post this. It’s been two days writing and the more time that passes the worse quality it will be…

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