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.
“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.