Tag Archives: proctocolectomy

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 jalapeƱos 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. 

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…