Who’s alive? Ever since I joined the cancer club and I’ve been myself in the VIP crew of stage IV colon cancer patients, I see lots of dropouts. Some stop posting, some are gone. We don’t get an update about most. For me, I was upgraded to stage IV in early 2017, and in these four years it’s been a decline I’m not ready or willing to admit. I was going to the gym in 2018 and ay least twice I got to the strongest I’ve ever been in my life, then some medical issue, problems eating, spending a while away from the gym, weak again, and start over. The last time was 2019, and then I was doing my workouts until I broke my spine, and around the third time I realized I couldn’t keep doing this with a weak and broken spine. So I stopped in early 2020, when a day of hauling two laptops in the airport (eat the six fucking grapes, don’t tell customs you brought grapes from another country!) broke my back and I couldn’t shower without falling to my knees in pain. No more gym. COVID lockdown. Been sitting in my bed most of the time since then. The neurosurgeon will fix me but he charges twice what the insurance will cover, so screw the rockstar and go find a fairer guy, but chasing surgeons isn’t fun and I haven’t really looked or decided. The oncologist put me on painkillers that have done a great job hiding the pain and I’ve been wise enough to avoid breaking the spine again out of confidence that there’s no more pain and I can jump, run or whatever. The medication brought unstable vision. Eyes go from blurry to blurrier. The ophthalmologist said I need new glasses. The optician said the prescription doesn’t match and proved it. I went with the optician’s numbers because they are guaranteed, but the problem isn’t measuring, but the unstable vision that changes from right eye is blurry to left eye is now blurry, so we’ll see. I am weak out of doing nothing. Going up the stairs feels very difficult. I have the confidence that if they fix my back I will recover and will walk ok again. Who knows? Tumors are still there as far as I know, chemo isn’t so bad now, but it isn’t a stroll in the park either. Tumors are not in organs and that helps keep me in relatively good health, but they will grow and eventually cause some sort of mechanical death. But not yet. So for now I report that I’m still alive and my enthusiasm and willingness to live is fed by my heroes, some fellow patients that have taught me lessons on how to live this life as a stage IV cancer patient. Always grateful for their insights, the valuable wisdom I learnt from them.
A cancer update
I started writing this a few days ago, and then saved the draft and finished on Sunday.
Today we went to see my gastroenterologist after a full endoscopy I had about two weeks ago. It’s been quite a while since I posted, I can’t even remember, but things have been very dynamic.
For two and a half years I kept visiting the ER at least about once a month. It started when I had my takedown surgery and my ileostomy was closed, and my intestine was finally connected to my J-Pouch. I was very optimistic. I stayed optimistic for two and a half years, but the truth is that the thing never worked and it was a pain in the ass. A burn, I should say. Just a little after leaving the hospital after this surgery, I got married. I was so thin! I looked like a taliban hostage! A month before I went to the ER for severe dehydration for the first time. By chance I was taking a friend to breakfast, because I had found him a book he wanted, and while we were there, I started cramping horribly and he drove me there. I was afraid the heart and diaphragm would cramp too. This started to happen very often, and the doctors couldn’t find out why or fix it, and my wife drove me to the ER countless times in these conditions. It was horrible. I used to think, I’m ok with death, but it doesn’t have to be so painful…
I was in oncologic surveillance and I would have my carcinoembryonic antigen measured every three months. It started to raise. It went above the limit here, but in the US the limit is higher and I was right about there. My oncologist showed that it correlated with my hydration, and we didn’t care a lot. It was around the beginning of 2017 that my oncologist saw me and said that I had been ok, and that he would now see me every six months. I was very happy! Two weeks later I found this big, hard “marble” around my neck. I went back to the oncologist, he didn’t like it (How the €£¥#* didn’t he see it on the previous visit?!?) and send me to a tomography. The scan report said it was likely cancer and I was sent to a surgeon. We scheduled surgery. It was cancer, so the next day I went back to the operating room and he installed a port in my chest, for the chemo. Once out of the hospital, I went to seek a second opinion, fired the first oncologist because he was loosing a very important battle, and got a new oncologist, an oncology star here.
My new oncologist offered a more aggressive treatment. I asked if treatment would give me more life with good quality of life, or if I would just be made to suffer longer. He was very optimistic and so was my gastroenterologist. I took their advice. If they had told me my chances were low, I would’ve dropped treatment, I would be dead now, but I would’ve skipped chemo and the suffering it brings. I started chemo, I landed twice in the hospital. Meanwhile my dad was also diagnosed and started his own journey, and my father in law also landed in the ER for different reasons. We were one sick bunch. We planned to get together and go get cheeseburgers when we were discharged and healthy. It never happened. My dad was very damaged from radiation, spent five days in the hospital and started a long recovery that hasn’t finished yet. My father in law died. Strong as a bull, he beat up a neighbor that looked for trouble just the day before he went to the hospital, and then the hospital was so bad that his condition worsened and worsened. He died in August last year. About a week later I once again went to the ER. By then a lot of people in the hospital knew me. I asked to be sent to the seventh floor because the nurses there were so nice and knew me well. My doctor was ready to let me go home a couple of days after my arrival, as always, but just out of caution, he sent me to X-Rays. The X-Rays showed my condition was the same as when I had arrived. A colorectal surgeon was called in to judge the situation. They were worried I had a blockage and maybe a tumor was causing it and the situation started to look very difficult. They wanted a magnetic resonance, I suggested a PET. They ordered both and scheduled surgery.
When I woke up I was wheeled to my room. My wife my boss and two colleagues were there. Anesthesia had me very comfortable. I had just been given an ileostomy, my second one. There had been no tumor and everything had to work. Doctors were happy. I was happy. Chemo had been interrupted by this event. I felt fine, but the ileostomy was still working too fast and waste was very runny and I lost way too much liquid. I ended up staying about two weeks and most of that time was spent making efforts to make the ileostomy behave, waste less and get a thicker output. I had my wife bring me peanut butter. I asked for marshmallows. I chose my meals carefully. It started working. The doctors raised my doses to the limit until I had a blockage. Then we readjusted and a day came when my output was so thick that the nurse refused to measure the volume. I was discharged the next morning. I was very happy!
I went to chemo and finished in December 2017. I had to have scan done in a month, but I had my yearly trip to our office, because I work from home, and I didn’t do the scan then. Things started to get weird during the trip, one night the stoma was strangely swollen and I had to accommodate for that with a flat barrier and a different bag. Once back home I went to the hospital for a blockage, returned within two days after discharged, because of too much output and returned twice again under the same conditions. I wondered if I had run out of luck and my time was ending. They did the scan while there and it looked very clear and good. When I was discharged my wife took care of my nutrition, taking me progressively from simple foods to regular diet and that was it.
Since I was doing great, we went to NYC in July. We got unlimited metro cards and we ended up spending a week visiting the city and walking distances I didn’t know I could walk. We had days when we walked 12 km. It was great and it was too much, but it showed I was able of much more than I thought. Coming back home I took up the gym once again. I had a follow up scan that while clear, came with a report that mentioned spots in my lungs. My oncologist couldn’t see the spots in the scan and said not to worry, and we’d look again in my next scan. I didn’t worry but I didn’t forget.
It’s now Sunday and my scan was scheduled for tomorrow morning. Last Friday I went to get a creatinine blood test they in two hours showed I was clear for the scan. I emailed all my paperwork to the hospital and they are ready for me. They sent me a note about preparation for the scan. Don’t eat sugars, eat little carbohydrates and eat lots of protein. Something like that. Tomorrow it will be a PET, with the radioactive glucose tracer under resting conditions and then the scan, then go home to get breakfast and work. I already made an appointment with my doctor, next Monday afternoon at a most convenient time for my wife. That’s where we will learn the truth. I like another hospital, the most expensive in the city, because they give you sweatpants if you do a scan there, but I have no reason to do it there and it isn’t close to our home, so I will just wish for new sweatpants. I will just wish for no cancer, that’s the important thing, even if you’re in underwear!
I feel good. Let the trend continue, I hope.
Further reading:
“Driving Miss Norma”, a very comforting story about Norma, diagnosed with cancer at 90, and she chose to skip treatment, favoring enjoying life to the fullest while she could. Yes, she died, but she had great days with great quality of life that she wouldn’t have had if she had chosen treatment. The pictures are of wide smiles big slices of pie and pints of beer.
“The Philadelphia chromosome”, about the research about a chromosome transposition, the resulting protein that the defect creates and a drug that blocks this protein and cures a cancer. A very inspiring story about researchers and doctors, and their huge efforts to develop a cure and make it available.
A week after
Today is Sunday and my wife and I are preparing to go to yoga. I will probably stop writing soon and finish after yoga.
Last week I had a bad night. On Saturday my dad held a small family gathering with some distant relatives, people I hadn’t seen in five years the last time and even longer before that. But one of his cousins messaged me she wanted to visit him in his recovery and he was very happy and quickly organized the event. My wife and I had breakfast and lunch with family came too soon. On our way there we stopped to buy tacos for me. Lasagna wouldn’t be good. All the tomato and pasta would be very hard on me. I ate my tacos on a full stomach and I forgot my medicine. My tummy got bloated and at night it attempted to empty in a bad diarrhea that didn’t empty it and made me lose water and electrolytes. Around five I had the tingling in my hands, I took potassium but the way it was, I knew I wouldn’t be able to fix it myself without the hospital. I told my wife we should go. We prepared the suitcase. I was scheduled to be there for surgery on Monday anyway. The lump in my neck was found by the CAT scan to be most likely malignant, and my surgeon would remove it on Monday.
We arrived to the hospital soon and I was in good shape, so we didn’t even use the ER ramp. We found a spot, parked and I walked dragging my wheeled backpack to the ER. Everything was the old routine. I spent a year visiting very often until I was finally able to take a nine month break until now. A nurse came in and left, my wife told me she was the nurse she hadn’t liked after she told her to leave the room while she worked on my arm once, long ago. I think my wife didn’t leave and both stayed uncomfortable, but she did a good job and we forgave her. She peeked and left. Another came in and said hi enthusiastically. I asked if she had worked on me before and she said she did. She hooked me up to the IV line. I told her what I wanted: please do my left arm, not the right one, if at all possible, because I’m right handed. Please do it between the wrist and the elbow, not the back of the hand or the wrist or the elbow, because that’s much simpler to handle. If not possible, do whatever you need to do anywhere, the IV is a priority and I’m a good patient. She looked and looked and finally was able to do it as I asked her. I was very happy.
I thought it would be routine as most times. The third time I asked to use the bathroom, I felt the tingling starting in my hands. Once I got back to the bed, or as soon as I stood, they would cease, I thought. I was washing my hands and they began cramping. It wasn’t easy to get the soap off when I couldn’t rub my hands fingers of one reaching between fingers of the other. Hands were becoming stiff and tight. I forced them desperately and hurried to dry. I reached for a few paper towels. They became trapped in my hands. The nurse came in, pulled the paper towels from my hands and tore them. She dried my hands with the pieces. My wrists pulled inwards. My arms started contracting as I jumped on the bed and they started to wheel me back. As I left the bathroom I was in pain. Legs and feet were contracting. I heard my name in a cheerful tone and it was my gastroenterologist. I asked the nurse to pour electrolyte solution I had with me into my mouth. I couldn’t open the bottle or hold it. I drank the remainder of the bottle. Back in the room my wife opened another one and emptied into my mouth and then she open a third one and I drank some too. I asked my doctor to put potassium in the IV. My numbers were good, he said, but soon a nurse came in to put a little potassium into me. My cramps were not as tight now. Brilliant! My doctor put a little potassium that wouldn’t hurt a healthy person, but would certainly help. I asked my wife to pull my hands and arms straight. I was in pain! I had been thinking, ok, if I have to die, I will die, but “this is not the way I go!!!” But the cramps weakened. The nurse came back and I asked my wife to take a picture of us together. By then I was already crying, so thankful for being helped with the electrolytes out of the cramps. It was a picture in which she crouched to reach my level and we held both hands tight, I was so thankful!!! Then my inlaws arrived. I cried as I held them as best I could. Then they said they had a room for me. My wife wanted to join me once I was there, but I wasn’t going without her. She came along in the elevator with me.
The room was new and I was pleased. I started to feel better and better, but I still had diarrhea. I had diarrhea the whole night. I was safe with my IV line. I had a ton of gas in my tummy pushing liquid waste out. I went to the bathroom frequently and my butt felt like a baboon’s! Monday morning I woke up early, pulled out my computer and worked, as always, but at two I quit to try to prepare for surgery. I went to the bathroom and lied on bed trying to get rid of waste and gas. I made progress and I thought I’d be ok. They eventually came to get me and wheeled me out to a room just outside operating rooms. I waited and waited. I fell asleep. I woke up and the surgery hadn’t been done. It took pretty long. My surgeon had been operating in another hospital and they were delayed, and when he came to my hospital the operating rooms were busy and we had to wait. I went to the bathroom before they took me to the operating room. The anesthesiologist, a lady, asked me if I was ready for the welcome cocktail. I said I was, she had her syringe in hand and pushed he plunger into my IV. I don’t remember much after that. I woke up with foggy eyes and the half awake and half paralyzed feeling from anesthesia. I tried to breathe deeper to help get rid of the thing, but it didn’t seem to improve. I had an oxygen mask and they had taken care to cover me with blankets. Somebody came to tell me they had finished and that I had shitted the bed in the operating room, but not to worry because they had cleaned me and placed diapers under me. Oh, I was happy to learn the story, but that’s what I had discussed with a work colleague when he called for help with a case. We laughed and he said not to worry emptying the tummy, just let it all go in there, and that’s what happened. I don’t think I have told him how it ended.
Next morning was pretty much the same, but I was better. Coming back from surgery I ordered food and ate, and the next day I woke up to work, except that I had a remote training session I had forgotten, and I tried to catch up and connect in time, but I lost time running to the bathroom with my IV pump and then connecting wasn’t immediate. I lost half an hour, and by then they were into questions and comments that just made me lose time. I then tried to catch up, they brought me breakfast and it had to wait until I had everything again under control. After breakfast the nurses wouldn’t give me my Metamucil and my gas-x, because the doctors had left a note for every 24 h instead of after every meal. We had a few fights until they gave it to me, but it was already too late and I wasn’t in the best shape for my surgery. Again, I made an effort to empty my tummy, but felt I could have been better. Time came and I was wheeled out.
The same nurse was downstairs and she again made a comment about the lotion I had put in my hands. My hands were so dry from washing them too often! They were already cracking. The anesthesiologist came talking on the phone and started preparing things. Then she asked to hold and came to meet me. She asked me if I had liked the welcome cocktail from the day before. I told her it had been a little strong. She laughed and asked if I was ready for today’s, and reached to my IV line with her syringe. I saw and hurried to tell her to wait a bit! I had to go to the bathroom and I hadn’t yet signed the consent forms! She said she’d do it inside and left, picking up the phone conversation on hold. They wheeled me in soon. She now put the injection and they worked on local anesthesia and sedation (the welcome cocktail). I woke up very suddenly as they were finishing up. It was immediate. I think they were seeing me up. I heard them talking and working, and I told them I was already awake. Soon they wheeled me out to recovery and then to my room. My wife wasn’t there but I found my phone and texted her. She was in the restaurant. A friend had driven her to the hospital and they were finishing a meal. She hurried and came to see me. I ordered food. I was hungry. It was a mistake. I ate a lot and had a bad night.
Next morning, the doctors came early and said I would most likely be going home very soon. Around ten, probably, a doctor came with a nurse to give me my discharge paperwork, and the nurse started to remove the IV line immediately. I called my wife to let her know. I called the insurance office to let them know, but nobody answered the phone. I went to take a shower. This is the best shower, once you don’t have the IV line and are “wireless” and free to move and stay under the hot water. Showers and food is my favorite when I’m in the hospital. My wife arrived and the insurance was still working my release and payment. We fell asleep. When they were done, I went downstairs to check payments. In all, I only had to pay $25.00 USD for a box of gloves the insurance hadn’t paid. This time they even paid the few diapers they used. I was happy. I had asked my wife to park on the fourth floor, which has a direct bridge to the building. Nutrition service arrived with lunch and my wife and I ate it before leaving.
The tummy has been improving slowly. Diarrhea has decreased to my usual normal, irritation is pretty much gone and I’m sleeping a lot better. Actually, i sleep peacefully as if I were healthy! I don’t feel sad. I have a sense of humor. Today I went to sign a work contract, and in this case I get to earn a bonus just by being in the company in a year and in two years. I need to be alive to earn the bonus. Maybe my wife will keep the money, but I need to make it until then. I also got life insurance. The amount isn’t huge or awesome, but it’s something. I have to rush reading the books I have bought recently, it would actually be sad if I didn’t finish because of lack of time! I don’t know what more I want. Of course, being cancer free would be awesome! I don’t know what my odds are or what an oncologist could expect of my case. I am sure I want quality more than quantity. I am happy with who I am and who I became, and how I led my life. I have already lived ten years more than my mom. This isn’t bad. This has been good and I’m still here and happy.
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.
Colon Gambit 