Tag Archives: tomography

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.

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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. 

At the oncologist

Let’s start this while I wait and see where it goes. My gastroenterologist suggested a tomography because my tummy is hard to tame and I went to the ER about a month ago, and the doctors initially suspected a blockage. I ruled it out immediately because I was pooping a massive flood and the nurses were already tired of wheeling me in my bed to the toilet, as their policy says, but I welcomed the tomography because it’s always better to see and know ahead than just waiting blindly. 

Results came in and there are calcifications here and there, and some could point to tumors, which scares me and makes me very nervous, because I should be clean. It is what it is. Dr. Internet said those things point to old lesions, but I need to hear the oncologist. For now the worst case would be a bad suspicion backed by my CEA marker requiring a PET. I haven’t seen the results of the CEA, because reality is tough, but I already downloaded them and asked the receptionists to print them for the doctor. It’s been a few minutes and they don’t call me yet. Sometimes my doctor arrives late. He once arrived casually for whatever other reason, not remembering my appointment. My wife said she just saw him, so it should be good. I brought the tomography in a USB I copied myself so he can keep it until our next appointment, and I copied the one from last year. I’m a smart patient, is like to say. We also brought mi wife’s laptop in case there was no other way to play the thing. 

I have been thinking a lot about my mortality. I tell my wife that it’s actually good, because if I were healthy and knowing nothing, it would come as a bucket of freezing water, and the surprising shock could be so bad that it can tear people apart. But I know the business I’m in, so the risks are known and I should be prepared to hear the most heartbreaking news, and I dearly hope I won’t. I dearly hope I will live. I dearly hope I will laugh at this when I’m eighty. 

My dad just turned seventy. We celebrated the last couple of weeks. I have him books he wanted and a CD player he needed. We went to a French restaurant yesterday and I enjoyed being with him and my uncles. They really had to be there. My dad lives with one of my aunt’s kidneys, and he has lived like that for about forty years almost. My aunt and my uncle also spent countless hijab Y my hospital bedside when I had my surgeries, and they are so dear to me. My wife, of course, was by my side and she has cared for me, supported me greatly, endured my storms and saved my life taking me to the ER so many times I can’t remember but the last one and the first one. My dad used to be a little sick most of the time when I was a kid, and because of this, I am a little ok with my current situation, far more sedentary than anybody my age. My dad now feels a lot better, and sometimes we talk about my future, wondering if I will feel like he does when I hit seventy. That would be very nice, but for now I am still covering from the heavy downpour that is this quarterly surveillance and uncertainty, I’m trying to do it as best I can. I don’t like the waiting room in oncology. It’s a ton of people and you don’t know anybody. Some women wear scarfs on their heads, and the rest you don’t know who is patient and who is company. When I was in radiotherapy we were an awesome bunch. I used to think of it as “the social club”. We all went there at the same hour every day, and while we were there rather briefly, we got to know each other a little bit. We used to share laughs and wish each other well. Everybody was kind and nice. We also got to see people in really bad shape every now and then, but that was not the norm. We used to sit and chat while waiting our turns. It was rather relaxing and encouraging, even though we knew that everybody was sick and we never knew what was going to happen to everybody. I hope they are around, remembering our “meetings”. 

It was raining outside and we’ve had three power failures already. The emergency power plant comes in soon and we don’t spend long in darkness. It’s now forty minutes after the appointment and we haven’t been called. Maybe the doctor isn’t here, I don’t know. 

The doctor just came in. My wife had mistaken somebody that looked like him, but he just arrived. He didn’t see us in the waiting room, but now he’s calling us in. 

—————-

He looked at it all and decided to measure again in six weeks. The marker is a bit higher, and higher than the maximum safe value. My liquid balance issues make him want to wait this bit more before requesting a positron emission tomography. He looks very, very calm. He says I look very healthy, and I wouldn’t expect to feel any different even if I were starting to get into big trouble, but I do feel assurance. I am happy, even if there’s no reason to celebrate. A “we don’t know” is not a “you are as healthy as when you ran the marathon or when you biked the pacific coast”, but it isn’t a “the ship has sunk” either. We walked out and now it’s dark. I wanted the hot chocolate mexican style they are offering in Starbucks as one of the specials for this season, so I told my wife I’d buy her chocolate. I drank the hot chocolate from there to her car. I opened the passenger door for her, gave her the chocolate and drove off. The chocolate is ok, but it isn’t like the one brought from Oaxaca. It’s pretty good and it was gone soon. My heart is resting. The tension is gone for now. What can I do? The doctor is the one who knows and I never ask them to be simple on me, they know that I will do what they say it’s needed. Why worry? Why not worry? It’s my life what is being gambled, but I put my trust in this man, and he should have a good judgement to guide my health. 

Tomorrow is Tuesday, I will continue to work my shift, and then try to enjoy my time. I am reading a book (this books with 800 pages make me nervous, because as a cancer patient, you’d better hurry to make sure you will finish it!), I started building a plastic model airplane, and we have a young puppy that just became old enough to go out, so I have to walk him whenever possible. The little guy is awesome and keeps me happy. I will enjoy the coming six weeks and I will make an effort not to visit the ER during this time. On Friday I see my gastroenterologist, and I wonder if he will see in the tomography any reason that may explain why my tummy is so difficult and stubborn. I judge these problems outside of the domain of cancer. These problems explain why I have written almost nothing in the past two years. I hope I can write more often.