Tag Archives: chemotherapy

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…

Almost done, first half

I saw my oncologist on Monday. I was expecting just one more day under those extra poisonous Xeloda pills. He said I had a full week to go “just like radiation”. I said that I had already had 125 pills and I had two weeks of radiation to go. Clearly the result was that my count was bad, he was right and he triumphantly said “you owe me a coke!” as we walked back from radiology to the examination room.
So up to this point I needed one week of poison and one of radiation. I was happy I’d be done much sooner than I expected!

I was running out of those expensive pills. My girlfriend had got a set for two days from a colleague. One of the awesome lot reasons to have a biologist girlfriend that works doing research in the national university here. She sent me a message she was to arrive at my home while I drive back from the hospital. I stopped to buy a 1300 USD box of pills. The bank rejected the transaction saying it was suspicious. Quite suspicious, I’d say! I went home. I called the bank and they removed the hold. My girlfriend arrived. She was very tired. I drove off with her, stopped for gas, stopped for pills and had a good meal. I ate like crazy. She ate most of hers and I finished what she left. Then I took her home. I always carry a pillow for her. She fell asleep and I drove carefully to avoid waking her up. Dropped her off and drove back. I was very tired and it was very late, but we had eaten well and she had had a good and comfortable ride back home.

My next radiation day, my radiologist showed up to see me and follow up, and she said that instead of 30 sessions, we’d have 28, as the dose was heavier. I was very happy! She said we’d be done on Monday, one day before I calculated! Then I counted fingers and realized that couldn’t be. I was to finish before Monday. It would be Saturday.

Last night I was feeling bad. My tummy felt just like when the guts are coming to a complete, painful and miserable stop. I had nothing for dinner. Some tea, just that. I went to bed early. All night my guts worked and I emptied my ileostomy bag three times. Some pain was there, but not like when I landed in the ER. Way far from that. Today I ate little, mostly liquids and the softest stuff. I feel it is improving. I will lose weight, but as long as I stay away from the ER, it’s a price I’m willing to pay.
Weekend is coming. I will get to spend time with my loving girlfriend and it will be a good reward after a difficult week.
Everybody stay healthy and feel good!

A good first week!

Last Monday I was very nervous. I started radiation and chemo pills. I felt the side effects before starting, and that told me that I was going crazy, that I should judge well things and avoid thinking silly weird thoughts. Radiation hasn’t been bad, and they say it’s until the second week that it starts to feel. The pills have been mild so far. I suppose the effects add up and I will eventually feel something, but not now.
This morning I went for blood tests, and I am very happy. This is the first time in about seven years that I don’t fail hemoglobin! I scored a normal value! Iron and ferritin look good as well.
I took my radiation dose and I am glad that the weekend is here. No radiation or pills, just time with my girlfriend, a 5km jog, time on my own and some rest. I am not anemic anymore!!

I am happy!

Hello, Xeloda!

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

The time has come

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

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

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

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

😉