Tag Archives: colon

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…

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…

Hello, Xeloda!

Today was my first day with radiation and chemotherapy. Half an hour after breakfast I took the three pills of pure poison and began consciously checking how I was feeling until I forgot. Then, a few hours later, I left with my dad on a taxi to get the radiation. It turned out simple as they had told me. They had said, you won’t feel a thing the first day, and it was true. In the afternoon I went to the supermarket to buy sandals, baking soda, a scale and supplies to take care of my chemoed body and my nutrition. I ate enthusiastically today. It’s just the first day, but a good start and I am wishing the whole treatment could be like today!

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!

The scope

It was more than enough to have diarrhea. I also knew I was anemic and it seemed the hemoglobin was decaying very, very slowly. I still worked, travelled, lifted machinery and everything. I had been concerned for a good while now, but fear is very strong, and I wanted to become healthy out of adjusting my diet, taking probiotics, reducing stress and eating clean. None of these measures helped the least little bit, but I wanted to feel I was doing something.

I was assigned two trips: one to freezing Wisconsin, for two weeks, and after one weekend at home, three weeks in cold Bogotá. I went to Wisconsin. The trip wasn’t easy, but I got there, as always. My stay was very difficult. I was having a hard time going to the bathroom. Pooping was very difficult. Something was obstructing the exit. I wanted to give it time to heal and clear, but I spent my nights running to the bathroom. Two weeks passed. I finished work and flew back home. Spent the weekend in my city, went out with my girlfriend, had a good time, worried and hoped. Monday morning I was on a plane on my way to Colombia. I love the place, but this was my worst visit. I travelled with a new colleague that I hates after the first exchange of words. The idiot behaved like fellows that sell in local markets. The insecure bastard had to show brands in his clothing to make his person valuable. It was bad and I ended avoiding him outside work and avoiding any talk unrelated to work. Outside work, the weather was cold and rainy, and guess what kind of weather I don’t like? The stupid hotel had a shower that delivered cold water and colder water. My problems were still there and I still spent nights in the bathroom. Of course I should’ve healed by now, but fear makes you stubborn. I spent the three weeks working, walking the neighborhood, I saw a friend I have in Colombia and she showed me a cool place to eat nearby, I got my girlfriend a very beautiful gift that screamed “Colombia!”, the most expensive gift I’ve given her. I discovered mulled wine in a coffee shop close to the hotel… It wasn’t that bad of a stay, but it was certainly difficult. I finished work well ahead of time and the last week I was assigned something else on my own. I was happy and relieved. When the time came, I flew back home and I was already assigned to two more weeks of local work. I did it, but I asked my managers from the start to give me a day to go see the doctor. They have me a Friday.

I woke up early and went to the hospital to get a fresh blood test. Around noon I drove to the other hospital to see the doctor. The results had been delivered via email and I had a printout. The doctor was a nice, calm man that looked very wise and I felt I could trust him. He asked questions, took notes and eventually the time came for me to be examined. It was the first time I had somebody put a finger in my ass, nothing nice, but the doctor said he believed I had polyps and he had to do a colonoscopy. Right then an email came with a ticket to Maryland. I told the doctor I had work and I could schedule… “No, he interrupted me, I want you to be admitted in the hospital tomorrow morning, if possible”. He made me call my manager to cancel my flight. My manager understood and didn’t require a long talk. A few minutes later I saw the emails canceling the flight. I thought I would spend the weekend with my girlfriend and my family, as always, before taking the plunge on Monday. Monday came and my doctor scheduled me for Wednesday. I prepared and Wednesday morning I rode a taxi with my dad and my girlfriend to the hospital. I signed papers , handed a credit card… It felt unreal. I was taken to a hospital bed and changed into a hospital gown. A nurse put an IV, drew blood, routine for her, new stuff for me. They wheeled my bed into the procedure room. The anesthesiologist put something in my IV and then I woke up with my girlfriend and my dad by my side. The doctor came in and said I had thousands of polyps. The colon had to be surgically removed. I didn’t know how to believe and understand that. The following days I was given packs of blood and also one of iron. They were preparing me for immediate surgery, but at some point my doctor and my surgeon decided to schedule that for later. Saturday came and I was released. I paid the hospital and I paid the doctors. I asked for a taxi and rode to my dad’s house, happy to be free, smiling I had been allowed to spend some time out to digest this information. I could not believe I had to have any surgery at all! I mean, I understood, but how could this ever happened to me? How could I have a genetic error that made my colon a time bomb that would explode with cancer before being 40? Those things happen, but they happen to other people! What if I died during surgery? What was life going to be? Would I be able to work after surgery? Would my girlfriend stay with me? Would I be left useless? Would I have control of my sphincters? Would I poop out my ass? Would I live long? How long would I live? Would I be financially safe? How hard was to deal with all those questions! How hard was to realize I would probably live less than most people! Sometimes my thoughts brought a few tears out. Sometimes I felt I had a watermelon in my throat. How should I have prepared for something like this? I never felt I had moved from childhood to adulthood. Cut my abdomen? Remove a huge intestine? Connect a bag to my belly? Would I break down and cry when I saw a bag on my belly? Would I die during surgery? Would I die? So soon? Me? Die? And I could also be hit by lightning and run over and a thousand possibilities… My mind raced.

Arrival to Santa Fe

This morning, arriving home to rest breakfast, I found on my table a ticket. I had seen it yesterday when my girlfriend and I shared our first meal together at home since I left. The ticket was dated may 29th, and was for a Burger King whopper with fries. That was my last meal, what I chose because it was tasty, quick and nothing would remain. The next morning I woke up early. It was cold and rainy. Of course the sky was crying! I wasn’t sad or happy. I did not feel in the mood for either emotion and I was in a bit of a hurry. My girlfriend was on her way. She’d got up early and rode the subways and the buses hurrying to get to my house. I called a taxi. The taxi was late and my girlfriend was waiting at the gate of the building complex where I live. I hate these situations. I was getting quite upset. Then the taxi arrived and we headed to the hospital. It must have taken 30 minutes on the new toll highway. We arrived and did the admission paperwork. A lady took us to a cold room and we were left there to wait. The room had a hospital bed, the outlets for power and oxygen, light furniture and a small bathroom. The window showed a cloudy and sad day outside. Back in April little did I imagine I would be there, and months before I never imagined any hospital stays in my near future. This is a story about life, about lessons of love and about living with a good attitude when life kicks you in the face. This story begins before I was born and reaches the present years in a quest to find happiness. This is a story in which our hero finds happiness, only to see it’s very foundations shaken from the root, and then is held up from a disastrous fall by true giants.