Tag Archives: cancer

The wait

Last Saturday I went to get my CAT scan. It was all routine, drinking a ton of oral contrast, walking into the room, having an IV line hooked up to a vein, getting a syringe test, then a water test with the mean machine and finally, after alignment, the poison and the scan. The poison wasn’t bad, I was able to handle it quite well, but it really feels it’s beyond control when it enters the body. The feeling that the body warms up, heats and burns from the inside out, and the flavor and smell of the drug flood the senses and then it’s luck, because it feels nothing can save me. As the body processes the poison, it feels I’m saved. This time I had to go alone, my wife was taking a class in a neihhboring city, but I felt confident. I packed a sandwich, because I had been fasting for the scan. When it was finished, I asked the nurse if i could take a picture of the machine. She started to say that it wasn’t allowed as i took a couple of pictures. It was not a question, I was just being polite. 

On Monday I saw the oncologist. He said we had to remove the lump to have the lab say exactly what it is, and he said other similar lumps had been found in the back of my abdomen. That’s it, no more details. He gave me the number of a surgeon and we left. Arriving home, I now went to see the reports from the scan. It said a lot, but the important stuff was that the lump in the neck has a high probability of being malignant, and the nodes in the back of the abdomen have increased in size since the last scan, in September, and are considered a progression of the disease. Liver and lungs are clear. 

A day later, or two, we went to see the surgeon. We really liked the guy. He explained the surgery is simple and that it won’t take more than two hours at the very most. He explained the risks and he said he’d work under general anesthesia. He said I should be ok to leave the hospital within a few hours, but since insurance is involved, I’d have to stay a day, because of the policy. He filled the paperwork and gave it to us. We bought a couple of club sandwiches down in the cafeteria, and took them home. We were hungry and the sandwiches were great. They packed a bunch of jalapeños in a paper cup and they made everything a ton better. I haven’t been eating spicy for a long time because my tummy is kind of frail, but when I taste it, it’s like a burst of life!

I sent the paperwork to the insurance company and the authorization should be in around the middle of next week, and the surgery is already scheduled for Friday. 

Since I saw things might be becoming difficult, to avoid saying “nasty” or “desperate”, I did go ahead and ordered a few books from Amazon. Two for my dad, and a few for me: one about the philosophy of happiness, one about cosmology, one about Turner and his paintings, and leaning more to the ones about ships and the sea, one about a transplant surgeon, one about submarines in WWII, and Miss Norma’s book, this 90 year old lady that when diagnosed with cancer, she skipped treatment and went to travel cross country for a year with her son until her health failed, and every single day on the road she shared beautiful, inspiring and comforting pictures of her enjoying life to the fullest, always all smiles. My books should be delivered one day before surgery, and with luck, they will go to the hospital with me. 

All this has left me thinking a lot. I feel I have a very high potential to be heading to a death sentence. I feel great. I have been enjoying my days so much now. In the mornings, heading out to work from my dad’s house (I’m taking care of him while he recovers from treatment), I smell the cool, moist air filled with sweet orange juice from the stand by the avenue, I see the clouds, a very light shade of gray mixed with warm tones from the early morning sun, and, going the opposite way of morning commuters, I sit on the half empty bus, happy to be running the three stations to his home quickly and effortlessly. I stop and feel the taste of my food. Man, it’s so good! I usually pack scrambled eggs for breakfast, a little rice, some fresh papaya juice, cheese, cookies, yoghurt.  I consciously observe all I am enjoying at the moment, and I feel happy for it. Yes, nobody wants to die, and I am no exception, but we all will. There’s not much of a choice. We don’t want to die young, but we don’t want to die old and frail, we don’t want to die in pain or sadness, but we want to take the time to say goodbye and finish important business, and we don’t want to die in a state of dementia where we don’t even know what’s going on. So, I think I will take my process as if it is the best and make the most of the grim situation, and enjoy the ride like Miss Norma while it lasts. 

Still, we have to see the lab results and hear what the doctors have to say about it and the options I have. Maybe I am worrying way ahead of time. With some luck it will be like that, but here we don’t get so lucky. I haven’t waken up to realize it was just a bad dream, and it’s been about four years since this all started, so I’m starting to consider that it is real. Oh well…

CAT scan blues

The time has finally come. This Tuesday my insurance company sent the approval authorizing 22 hundred bucks for a tomography and an ultrasound, and on Wednesday I made an appointment at te image center in my local hospital. As everybody knows, a creatinine test is required, so Thursday morning I woke up very early to cook breakfast for my wife and for me, both to go, and then I went to the lab. I was running late, I arrived 7:30 AM, but it was surprisingly empty, and by 8:00 I was arriving to my dad’s house, to work from there. My dad is recovering from his own radiation treatment, last week he was admitted to the hospital for a few days, and now he’s recovering at home. Radiation is mean. Cancer treatment is very aggressive. My dad was doing great and treatment has robbed him of his strength and independence. He lost a lot of weight and is frail and weak. I have been working from the hospital and from his home for more than a week, taking care of him. Sick cares for sicker. Two years ago or so I was staying in his house. He gave me his room upstairs and he would bring me my food at night to my bed. In the mornings I would come down to get breakfast, but he had to prepare it. Today I help him every way I can. I hold him when he walks, I dry his hands when he washes them, I hand him water and the food he can tolerate, I spray water on his face, I bring medicine, I do as much as I can while doing my work. I see he is a little bit better every day and that comforts me. He will get out of this. Stupid smokers, if they knew what cancer does, I always think. But my dad and I are not here because of any tobacco. We are into this for different reasons. 

These days I have felt great, really better than ever. I have been able to care for my dad, work and I haven’t really been able to lay down during the day, which I usually have to do, because that’s the only way the air will leave my modified digestive tract, and otherwise it can become a painful problem that can take a good while to fix. But these days my body has behaved great to the point that I should be in great health and the scan should prove me clear. I don’t think this is the situation. A lump in an area full of lymph nodes feels like it will bring sad news, the worst I’ve heard so far. Everybody says “you will see you are doing fantastic!” But I don’t know how they can say such thing without knowing. Won’t they feel bad if it ends up being a lie? What will they say then? “Oops!” “I’m sorry, you had to live a week with a cruel lie” what? But I don’t really mind, the comment is silly and mean, but they do it with good intentions, and they really cannot make the situation better or worse for me. It will be what the scans say. 

Tomorrow I will have the ultrasound first. I once had one and it was messy with lots of “lube” to make the thing see (hear?) what’s inside. Then, with all the gooey thing on me, I will head to the other room to drink a liter of contrast mixed with mango drink powder, and when I’m so full that I may burst, I will go to the cold tomography room. A nurse will come to find a decent vein and start an IV line. I will lie down on the bed, arms over my head, and the technician will tell me they will run a quick test to see if the line and my veins hold and can stand the real thing. They will rush water into me. Once this succeeds, they will prepare the dose of poison, the contrast that runs in the veins. As they pump it, my arm will feel hot, then the center of my chest, and finally a fire will start from my lowest of the abdominal cavity, rushing up to the head. The smell of the poison will flood my nose and then the taste of the drug will fill my mouth. Pressure will build up. I will be asked to breath deeply, release and stay still without breathing. The bed will move and by then I will be hearing the machine spinning very fast. While having to lie still and not breathing, this is the time nausea may hit. You don’t want to screw up the imaging. Hold! Hold… can’t… hold!!!! I need to… Hold!!!! Then the voice will tell me to breath normally. This happens a few times. With luck, I won’t throw up. With more luck, I won’t even feel the nausea. The truth is that I have been doing better from my first scan to the latest. Last time I didn’t feel much. I call it “the mechanical scorpion”, but last time in September it was pretty mild. I think it should be mild this time too because I feel good, I feel better and I’m in better shape. What I’m not so confident about is the results. What else can the lump be? Who am I fooling? 

Results will be available a few days later. I will call my oncologist on Monday to make the appointment the same day the results will be in. I will enjoy my weekend. I will go to my yoga class Sunday morning with my wife. I will want to share a beer with my wife on Saturday. I will want to cook a nice lunch for us. I will hug our yorkie and will play with him. There has never ever been a happier dog. I will have Popsicles. 

I know I will enjoy good health at least for a few months, and that’s a lot of days. I want quality, not quantity, in terms of life. I don’t want a medical treatment that will make me miserable without really changing my situation into a promising outlook for a longer and healthier life. I don’t want to live in pain or die in pain. I don’t want to die alone. We all die alone, but I want to be surrounded by my dearest people. I want to reach my last day with the solace that all my loved ones will be left with comforting recollections of what we’ve meant to one another. I will live my healthy days happy and enjoying my time, eating what I like, feeling the sun, genuinely enjoying every sip of the experience of being alive. If results come good, I will celebrate. Let’s see. One thing is what I say and another is what actually happens when reality develops in its full potential. There are no gods here, never, I am on my own. 

The sky is crying

Yesterday we had shrimp broth and fish for lunch, and we hurried to see my oncologist. My tummy was bloating, but I wasn’t going to cancel the appointment. We made it there as the first drops of rain started to fall. 

The waiting room was full of people. A guy, young, overweight and tired, was connected to a huge and heavy oxygen cylinder. He wore sneakers, but it was obvious he couldn’t run. This disease is an asshole, it takes a healthy person that’s very busy minding his own business, calls his attention, and then between disease and treatment, they render him frail, tired, useless, unable to eat, move and be independent. 

The oncology area is a last minute add-on to the hospital. They built a small area hanging from the multi-story parking lot and on each level they made a few rooms. The receptionist called my name and escorted us to the elevator and the room my oncologist got yesterday. We didn’t speak a lot before he asked me to go to the examination table. T-shirt gone, he looked at the lump in my neck, touched it, observed it and looked at the area in general. Then he wanted to check the groin lymph nodes and the testicle I had reported. He immediately said it was definitely asymmetric. He and his assistant exchanged opinions in the lowest voice. He wanted to take a sample of the lump in the neck, she wanted images. He offered local images, she preferred full images. He conceded full images and also an ultrasound for the super testicle. They prescribed the images and said I would get the paperwork to place the request for the insurance company. They will look at the tomography to see the shape of the lump and it’s extent, and they will use the rest of the image to check for issues elsewhere in my body. The ultrasound will also be the first tool to see what’s wrong with the super testicle. Using the images I will probably have surgery to remove the lump and send it to the lab. 

While this can be something harmless, given my history, it has a chance to be bad. I will defy it and I will laugh at it while I can. I see a few options here. If it’s a new cancer, it will have to be treated and I will go into surveillance once again. If it’s the same colon cancer, I think it’s likely to have spread and become a life sentence. I will look for quality of life first and quantity second. If it’s some harmless thing, it will be removed and there will be an important celebration. 

The truth is that I have been feeling better and better, and while I spent last year visiting the ER, I have been improving and it’s now been months without going there. That speaks about a better health, but then why the lump? Stupid disease. 

As we were paying, the rain became much stronger. I told my wife I would walk to the car and drive to her. She would wait under a roof. I walked under the covered paths, but those work well if the rain is light. This was getting stronger and the wind was picking up. Ten meters to go and I was going to be in a building, to cross to my car, and that’s when the wind went really wild. I ran hard and the wind blew lots of water horizontally on me. I was so wet! I screamed as I made it into the building, because if you don’t scream it’s not as exciting. People said nothing. I walked into the Starbucks, stole a napkin to clean my glasses, and another one to clean my glasses in the car, and headed out. My car was right there, across the narrow street, but the wind was very strong. A man and a woman came out. The man ran to his car and the woman decided it was too strong and went back in. I waited for the storm to loosen a little, but it didn’t happen and ran to the car. I was soaking wet. I drove to my wife. She was completely dry and knew nothing! It took an hour to get back to our house, which in other conditions can be reached within ten minutes. Some places were flooded, lots of people had fallen victim to “hydrostupidity”, which is what happens here when it rains, and then the accidents. 

My wife suggested a hot shower, but by then my tummy was so bloated that I really needed to work on it. I played Sonny Boy Williamson’s “The Sky is Crying” and wrote an email to let my people at work know. 

I wasn’t too happy. The news weren’t good. Not happy news at all, and then I was cold and my tummy was bothering me a lot, and my tummy was the one that made the situation bad and brought the sadness. I know I can be stronger, but I shouldn’t have had tummy problems. I was sad. 

Lump

Some two weeks ago my oncologist cleared me until September. I feel good and I was very happy that things look good, and then yesterday I found a lump in my neck. A hard rounded thing on one side, and nothing in the other. I was concerned. The area is a region of lymph nodes and lymph nodes are related to cancer. The oncologist always feels for them when I visit. I am thinking that if this is cancer that spread from the original tumor, this is a life sentence. If this is a new primary tumor, then it means I will have to undergo treatment, which is far from being a party. I also have a ear that’s locally thick, and I’m not as concerned and a few things to discuss. 

I don’t feel scared. Today wasn’t an easy day and I thought I was depressed, but then I understood that I didn’t sleep so well last night, and then my wife woke up very early to go teach her 7:00 AM class, and I got up to prepare her breakfast, a sandwich with egg, smoked ham, spinach, cream cheese and chipotle mayonnaise, yoghurt, a small Brie cheese, a chopped apple and some fruit paste, crackers and hot coffee with milk in a thermal cup. I could’ve used an hour more of sleep. It was a bad day in that sense. In the afternoon, when she came back, I fell asleep. She woke me shortly after and I was in such a deep sleep that I couldn’t understand what was going on for a minute or two. Then we ran to the dentist. I drove all the way feeling a little groggy, and then on the chair I was closing my mouth because I was ready to sleep. It was good, the repair works well, the doctor is great, she’s Colombian and she exploits my liking for her country talking about what they eat or drink there. Today she was telling me I should have a shot of aguardiente. I asked which of the three brands she likes best, but she said all are good. Usually they prefer the one from their region, but the truth is that they don’t taste different. 

On the way back we went to the supermarket, we bought a ton of shrimp and I will make some broth this weekend, as good as in any cantina, except that I don’t eat spicy anymore. 

I got a call from my oncologist, my appointment is on Monday. I think it will take a little time to figure out what the little alien growing in my neck is, and what his intentions are… 

Back home, our yorkie jumped and jumped as if it was the first time he saw me in centuries. I love the guy, even if he does something stupid, like this morning when he stole an apple center I had discarded and swallowed half, and then puked while I was in the shower… But it’s the awesomest dog ever!

I sent a picture of the lump to the oncologist, a portrait, and I only had a cartoon app to point at the lump. I used a drawing of a knife and an arrow to point at it. I hope he laughed. Maybe the mood will be serious next Monday, but as long as I can, I will enjoy life. 
🙂

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…

The ways of life

Today I’m not writing about myself strictly speaking, but about a friend and about things that happen in this life. 

We have here two pollution control tests every year for every car, and our cars are due the same month. My wife remembered, and I asked her to call our mechanic to see when we could take the first car. She hadn’t been able to reach him, and I thought it was weird, but yesterday her call was answered. As usual, it was his wife, but soon she told my wife the bad news. Our mechanic had had a stroke in the first days of October and a week ago had been discharged from the hospital. He is alive, but he is in very poor shape, only able to move his left hand. Our mechanic is a family friend from very long ago. He worked on my grandfather’s cars, he worked on my dad’s cars, and he has helped the whole family. We used to be neighbors back when I pretty much lived with my grandparents. He once taught me how to adjust my brakes and I tuned up my dad’s car under his guidance. He likes to talk and I used to hang out for a while when picking up our car or leaving it. He was always smiling. He studied architecture, but went back to work on engines. I always thought he should’ve chosen engineering, but for some reason he didn’t. 

Hearing the news I felt sad and I was very impressed that a relatively young man had been through such a terrible thing. That a good man that has his own business is now unable to work and provide for his family. His father live to a very old age, just like mine, and I think we both had the plan of doing the same: living healthily until somewhere beyond 90, and then die peacefully in our sleep, like his father and like my grandfather. His father, a blacksmith, had only one problem, and it was bad eyesight by a life of soldering without mask, which back in the time is how things were done. Other than that, I also know he once survived a bad illness that threw him in the hospital for a lengthy time and made a slow recovery into full health. Who would have guessed we both would see our expectations be cut in one severe and merciless blow? First I tangled up with a mischievous large intestine that a genetic condition ensured it would get cancer by my fortieth birthday, had it removed along with a tumor the surgeon found while working there, and ended up in a very frail and limited state. Then he survived a stroke and is in a much more limited and frail condition than me. I used to tell him about my trips to the hospital and about when I was doing better. I always imagined he’d be strong all his life, and now I can only imagine how he feels, so unable to do anything, requiring assistance for everything, wondering about the future and his recovery, hoping to regain as much as possible. 

I called my dad today to let him know. We agreed that we’d try to help with some money. We are not rich or anything, but I’m still working and I’m sure our friend has had expenses and can use any help. We decided to give less but more frequent along a longer time, as opposed to a larger amount only once. We also discussed visiting. We think visiting isn’t the best right now, unless they tell us it’s ok, but otherwise, we don’t want to bother or cause discomfort. I will tell them I will be happy to visit when appropriate and they will tell me when it will be ok. Until then I will only see his wife to give her the money we can afford to offer. I will ask if his nephew is working. They worked together at the shop. If his nephew is doing cars, I will have him do our two cars and we both will benefit. I hope he can keep the shop and work it. 

I feel sad that my friend suffered such a terrible thing, I’m certainly happy he’s alive, but I think it’s a very, very hard experience, we don’t know the extent of the damage and while we hope for the best recovery, I wonder what his condition will be, what abilities he will recover and how he will experience the rest of his life. I don’t know if he can talk, if he can smile, if he will recover movement, and how much it will be, I dream of him recovering enough to still run his shop… Time will pass, the brain has the ability to find new ways to connect and recover, there are limits, these things are unpredictable and for now we can only hope. We live hoping. I’m in surveillance for cancer, every three months hoping that the oncologist judges me clean and healthy, constantly hoping I am clean by the time I’m 42 years old, which would mean I am free from the cancer I had when I started, I live hoping I don’t need to head to the ER, in severe dehydration, like countless times this year, I hope I can improve to be more independent and that I my body is more reliable. Health is something I never doubted when I was a teenager. I never thought anything could happen to me. I lied down on the avenue with my friends, and more than once I crossed the street under the box of a trailer. I biked the pacific coast of Mexico and I wonder if I would allow my sons to do it if I had them. 

Life can certainly bring terrible experiences, experiences that bring the deepest pain and sadness, a flood of despair, but we don’t want to go to customer service to file a complaint. They would ask for the good times to be returned as well, and life does bring happy times with a ton of joy. I’m not giving them back. I am very happy I have lived them and I’m happy about the good days I live. Life feels much shorter and frail now, but I do intend to make the most of my days. In the end I will be able to count them, weigh them and see that happy days exceeded the bad ones. There have been days in which I have only been able to enjoy the warmth of the sun on my weakened body, but that warmth does feel good, it’s a caress that makes me smile. Life is complicated and it isn’t easy to know how to live it. 

Of pouches and bags

I spent last week seeing doctors. I had a tomography done and all needed to see it. I saw the oncologist first, no worries, see my previous post. The next day, I had a bad night with diarrhea, and I saw where it was leading, so around six am, my wife was already driving me to the ER. A doctor, a nurse and a paramedic said hi to me with the attitude of someone that finds an old friend. I always say I’m a frequent customer, but this time they did know me!

I spent two nights in the hospital and my ER gastroenterologist saw me. He gave me different drugs looking to fix my ongoing issues with diarrhea and loss of fluids and electrolytes and I left on Thursday. 

On Friday I went to my first gastroenterologist, the one that diagnosed me, the one that has cared for me longer, and casually also the teacher of my ER gastroenterologist. We spoke about a lot of things: he would go and see the tomography with the radiologists, as they are the experts, he found it strange that the report didn’t say any explanation for my situation had been found and he discussed adhesions and a permanent ileostomy. 

So, that is what I have been thinking. I have a J-Pouch, but for nearly two years it has performed very poorly. Back when I had the ileostomy, life was so much better. Could it be like that if I went back to the ileostomy?

Today I had a bad day I spent lying in bed without doing a thing. This is way too much. The uncertainty of not knowing when it will be the next time I will land in the ER is ridiculously evil. I’m really considering the permanent ileostomy. I will be discussing with my doctors and carefully taking the steps. I think that’s what will end my problems. My lifestyle has become very severely limited. I used to be in better shape with the bag. I’m very restricted at work, very thankful for having been given the chance to work from home, but this is not the way things were intended for the long term. With the bag, as it was before, I’m sure I could start visiting local customers and handling more activity. 

I’m going to be exploring the idea carefully, but I think it will end up being the solution. The pouch idea is good, but it didn’t quite work for me. The bag doesn’t scare me, it’s rather an old friend. I think the time for me has come to recover my life. I will be working on this. 

Long recovery

This was to be posted yesterday, Sunday. 

I stopped writing sometime in late October last year, I believe. 
This became so difficult and time consuming that I forgot to write… There’s been good days and I’m alive, but quite uncomfortable. I’m improving and I’m better, but I still complain all the time and sometimes I feel bad like today. 

At the beginning of November I had a blockage. I tried to stay home for two days, but when I was puking, I understood I needed an NG tube. My girlfriend was there and I had her pack quick. I barked items and she did her best to find them and put them in my bag quick. I had called a cab. Those days before Uber… I was staying at my dad’s, and then his wife arrived. I called the cab and told him a nice lie to avoid hurting his cabbie feelings and we left on my dad’s wife’s car. 

I was admitted to the ER. It was night time and since my stoma filled a bag while they were checking on me, the doctors decided I was ok but I should stay for the night just in case. It was a very happy thing to hear. I was left alone by my family and they expected me around noon the next day. At night, they brought me apple juice, the real one, cold, delicious. I drank it and that’s when I started puking. 

I will try to make this short because it’s been so long and I want to get to today, which wasn’t pretty either. I spent about a week without eating nor improving. Then my surgeon took me to X-rays to test my pouch for leaks. The test is awesome: they insert a thin line in your butt, and they pump  contrast in. Then they take picture after picture in different positions, and after that I still had to drink a nasty contrast for whatever else, and all the while I was pooping the butt contrast while dealing with a headache and feeling nasty. Results were good and my surgeon said that he’d go in, find out why I was blocked so bad, fix it and reconnect me to my pouch. It sounded like a great deal to get rid of the bag and go home. 

My doctor found all the intestines tangled, arranged the spaghetti properly and reconnected me. After surgery we waited another week without food, until it was obvious it wasn’t working. I went to another surgery again. My surgeon rejoined my intestine in a better way, preventing what had gone wrong, and then I was out for recovery. This time it worked. I spent a week progressing to solid food and I only left until I proved I could drink the liquid my body needed. 

Recovery was slow, bad and painful. I used to sit under the sun, not wanting to move at all. If I felt ok, I didn’t want to move and feel bad. If I felt bad, I didn’t want to make it worse. My dad would carry breakfast and a night meal up to my room in his house. I ate simple. I craved food. I suffered the pain. I began losing weight. I was so weak that going up the stairs was tough. My weight dropped and dropped and I wasn’t moving much. 

One day I started walking and a few days later I realized driving wasn’t going to be difficult, and that changed my life those days. I was able to drive to my house, to the supermarket, everywhere. Then one weekend my girlfriend and I stayed at my home and then I never went back to my dad’s. 

I was still too weak and had lost 20 pounds. My girlfriend and I were already planning our wedding. We got married at the end of April. 

Two weeks ago we finally flew away to our honeymoon. I have gained almost all my weight back. I’m still weak and I don’t feel awesome, but I am stable. 

Today we went to celebrate her birthday with her family, but I started to feel my hands tingling, got pretty scared and decided to leave. Walking to the car my hands were cramping closed. I kept drinking my electrolytes. I asked my beloved wife to drive. She had never driven my car. She took me home. She did an awesome job. As soon as we were inside I hugged her hard, cried a bit and ran to the bathroom. Then I lied on bed on my right side, allowing gas to leave. I feel much better now. I hate we had to leave the celebration. I’m kind of hungry now and my tummy doesn’t feel healthy or awesome…

The time has come

After weeks waiting for those idiots approving medical procedures in MetLife, they have finally decided the paperwork is complete and good, and I have the ok to start chemotherapy and radiation for whatever cells dared to remain in my body after my colon was removed in July. I feel somewhat relieved that everything is ready, and I also feel nervous about what I am going to live over the next six months. I feel good. If I were in bad shape, medical stuff can take place without a lot of complaints, but I feel ok now. I try to see it as an investment in my future. Radiation will burn and cook my ass for a month, and the chemicals will be killing cells for half a year.

I say, radiation + strong toxic chemicals will make a superhero out of me. Watch for justice being made and a better world over the next few weeks. Villains will be beaten, punished and jailed. Be it common crooks or your nasty politicians. Families will have a break. Streets will be safe for the common citizen. We will all live in peace and happiness.

Said that, my secret plans are to keep learning to write programs, make a few cool machines like a simple robot arm, play my harmonica, keep working from home, keep reading, keep eating (man, I need to gain weight!!), keep jogging and prepare to go back to my house.

I also plan to keep being the biggest smile in the oncology unit.

😉

Becoming fit

I did some research and found articles where researchers report better outcomes for people that work out and those who have higher levels of vitamin D. My gastro already put me on vitamin D. A pill a day. I asked for iron and he let me take it, so I am on iron too, building the hemoglobin level that the evil and treacherous colon dropped along those years. I already saw improvements after the colectomy, and I wasn’t taking extra iron yet. Now, I am pretty curious about my next blood test. Be careful nurses, your needles will bend and break! Please keep your magnets away from me! I think I will be pretty close to normal levels already!

I am curious about those studies dealing with vitamin D. What did they mean? Did they mean that bringing up levels of vitamin D is directly related to a better outcome? Or did they mean that those patients that had higher levels before treatment had a better chance to become healthy? I believe it was the second case, but I take my pills every day, because I think our researchers have not fully studied the situation. It may just be that I don’t know.

As for workouts, I believe that being fit is always a benefit (and it sounds pretty cool being phrased like this!) running or jogging improve the way lungs perform, and being in hospitals, better oxygen use is always an advantage when the body is having a difficult time. It is my belief, because I haven’t proved it, that recovery is a lot better the fitter we are.

After surgery I started walking in the hospital and after I went home, I started working out every Sunday. I first went walking and I did 2 km, stopping in the middle to rest and drink water. Next week I walked the same without stopping. I kept asking my surgeon if I could run, and the last time he allowed me to jog.
I started going to a local trail/track. It’s not a track because it’s hilly and irregular, and it’s not a trail because it was built. It’s full of people because it’s the city, and in this poor country facilities are not awesome, but I live very close to the spot and I don’t want to sink in the traffic to go somewhere else.
I have been slowly building distance and speed (from snail to turtle is how I would best describe my improvements, just in case you wanted to be impressed and become a fan!), and my last run this past Sunday was 5 km in 38 minutes on the hilly course, and I did take a bigger hill during the last lap.
I used to run very often when I was in the sprint kayaking team in my late teens. I used to think anybody should be able to run 5 km any day of their life, and we used to tease a girl that ran the 5 km in 35 minutes. These days I have found out that 5 km can be beyond my possibilities and that those slow runs, while my goal is to improve them, are making me very proud.
I run with a bottle of electrolytes that I don’t touch until I finish my run, my iPhone recording time, distance and elevation (logging the data is very important!), my car key tucked in a small pocket and my big awestomy bag, hopefully pretty much empty. Sometimes the awestomy behaves, sometimes it’s in a bad mood. Last Sunday my belly was disturbed, let’s say. It didn’t feel nice, it wasn’t in pain. Disturbed is the right term. But it’s nothing to worry about. It’s just the way it is sometimes. I really believe I will start treatment next week, so this weekend is my last weekend running “normal”. I will soon start radiation and chemotherapy. I am pretty sure I will become a superhero. Everybody knows they get their super powers while subjected to extreme conditions and radiation plus toxic chemicals make a very promising mixture for the transformation.
My plan is to keep working out through chemo, even if it’s only walking, I will do what I can. The body must be as strong as possible to improve my recovery.

I wrote this a few weeks ago, before a blocked intestine landed me in the ER for a painful and boring weekend. It’s been two weeks since I left the hospital. I have gone running twice. Last week I ran only 3 km, which is about two miles for those that speak miles. I felt a bit weird, and in normal health I would have pushed my run to complete 5 km, but having an ileostomy and being somewhat prone to dehydration, I preferred to be cautious and stop. I didn’t like stopping. I came back in a terrible mood that was worsened by a rain that went from a few drops to a huge shower in the three minutes it took me to park the car. I had my big Colombian umbrella and I didn’t get wet, but still, I didn’t like it that it rained on me as if it was a fun prank or whatever. Silly weather.
The rest of the week has been sunny and I have been very happy. I wouldn’t be able to live in places like Wisconsin or Pennsylvania, for example. Maine is beautiful, but I only know summer there. Even Bogotá is too cold for me. Sunny days have made me happy this week.

Today I went running. It’s a hilly course. Like a half mile track on the side of a hill. Going uphill I felt pain in my abdomen, on the right side, close to my ileostomy. I stopped after two laps, rested it out, and continued. Felt the pain again and decided to stop. The lungs were doing fine and my skinny legs were also good, but that pain didn’t let me continue and I again preferred to stop. Hopefully it was only something meaningless like swallowed air.

I promise I will do better next week. I may go to a level course in the university. I want to run the five km in less than 25 minutes. I want to be able to run 2 km in eight minutes even if my tongue ends up tangling in my feet. Those things used to make me feel good about half my life ago. For now, improving my distance and time are good ways to become healthy and in better shape to recover from whatever may come. Do you have cancer? Run with me! You don’t have cancer? Run with me! It’s good for our bodies.

My failed run today finished with a smile. An old man passed me twice on the track. I was happy to see him doing better than this 37 year old!