In Memoriam: Cagliostro
Posted: Wed Apr 29, 2020 10:48 pm
I may very well re-brand this later, as the name "Cag's Depressing Cancer Thread" (put here for historical context when I think of something better) seemed funny to me to go full Eeyore and lean into it.
For those not in the know, and to speak the name of my potential killer, I have been diagnosed with metastatic adenocarcinoma stage 4 cancer. If they could find the source of it, they would be able to treat it better, but currently the Batman Investigations (what I am calling all the horrid tests I went through) have turned up empty.
I went to the ER a couple times because of abdominal pain. It was thought that it was inflammation from eating the wrong foods, but started to lead to lots of food being the wrong food, and I would get pain in my chest that I wanted to rule out heart attack. Never any heart problems, so they would give me a GI cocktail and I'd feel better and go.
At the end of Februrary, I went to an Urgent Care instead and he suggested going on to the hospital ER rather than the small ER near my house because they had access to more equipment to check things out. He said he suspected it was gall bladder related.
I went over and got checked in, and they checked things out with the gall bladder, but that all seemed fine. They kept ordering test after test after test, and in the end was told there was some scarring on my liver, and that she was sending me back to my general practitioner to say that I need a liver biopsy and to have them run things, but that this is very serious and get things going.
A visit to my GP later, and she said I should go to a gastroenterologist as I wanted to dump mine after an annoying problem with my previous one involving their staff that I won't go into. Scheduled in two weeks. After having previously taken 6 months or more to get things rolling on thyroid cancer removal, I figured this was par for the course.
When I saw the new gas doc, and I told him I was here to set up a liver biopsy, he looked pissed. I think my GP left him holding the bag and shouldn't have, and shouldn't have waited. He didn't say this, but I could see it in his face. After checking several things out, he came back and said we'd get that rolling and he'd recommend a cancer doctor.
I think the liver biopsy was scheduled a week or so later, right as COVID-19 was gaining a little traction in Colorado, but no shut down yet. After the biopsy, I was told they were sending the results somewhere else and that I would hear back about it.
Meanwhile I met Dr. Moazzum, a man with a pretty thick Indian accent, but one variety my former Kansan old man ears can understand better than others. He was highly rated on websites, and every doctor I mention his name to say he is one of the best, so I feel like I am good hands. Despite his horrible analogies and lack of bedside manner and great lack of information giving.
He said we would wait for the results, but meanwhile he wanted to get a PET scan done. Before the PET, the results came, and they were inconclusive. My gas doc suggested I get a second biopsy, and when I told him about the PET scan, he said let's wait until we see the results, and we'll go from there.
PET scan came back lighting up in multiple areas - abdomen, liver, neck, lung, pancreas, and probably some other places as my brain shut down with the constant emotional whamming of "HOLY SHIT!" going on in my mind. He said it is 92% cancer, and 8% just to be inflammation. Another biopsy would be sought, but left up to the IR doctor.
Found out within the next day or two that they wanted to take another crack at the liver. Got that scheduled, and now COVID-19 really was big everywhere, and we were working from home during this time. I might write something separate later about the effect the pandemic has had on this and some of the scary.
After the liver biopsy, it was known at the name above, even though both my wife and I, through the stupid Zoom meeting, heard Adreno Carcinoma. But we were wrong.
Roll in the number of awful tests to follow, of which my last few weeks have consisted of, including the horrible nightmare inducing pee pee hole scope, an endoscopy, several ultrasounds, and on and on.
I was told recently I would be getting a port, which I didn't know what it was, and would be started on chemotherapy. They wanted to do more tests in the meantime, including a mammogram to rule out, and another ultrasound on my giblets (well, mainly liver and bladder).
After that was scheduled and ready to go for Monday and Tuesday of this week and chemo on Wednesday, I got another call that said I needed to be tested for COVID-19 before I can go into surgery. They scheduled Sunday for that. Now this awful thing is eating in the weekends now too.
We had been holding off from telling the kids until we had a treatment ready to go. It ate away at me keeping it a secret as I am an honest father, and I could tell they knew something was up. We came up with a plan and got advice from a friend who is going through breast cancer treatment as well who has young kids (younger than ours) and her advice on that. It was worse than having the Santa talk, but they handled it pretty well. The questions and upset is still coming but just waiting for some of the bad stuff to hit them.
I tested Sunday for the Coronavirus, and on Monday was feeling warm. Partly because my car had been sitting in the heat, and it was 80 degrees that day, and I also hadn't gotten enough water. I had two appointments Monday - one for the mammogram, and the other for an ultrasound. Due to a misunderstanding, I thought the mammogram needed me to drink a certain amount of water, and needed me to go in with some in my bladder. So when I got to the mammogram appointment, I had a full bladder and was running over 100 degrees Fahrenheit. They cancelled my appointment after testing again after I had set again briefly. I also had a new mask that was tight and hot that I was using. I switched it for a cooler mask and they tested again, and it was under 100, but they said they would not allow the appointment.
The other appointment had right at 100, but then after sitting there a bit was allowed in with 99 degree temp. And I found out I didn't need to hold the water anymore and had a life affirming pee.
The port was put in yesterday, and despite everything I heard and was told, they did not knock me out for it, and had to be awake as they put something into my chest above my heart and wired it up to my jugular vein. That was very unnerving, and the excuse they gave was that they would need to intubate me if they put me under, and said no more, but I figured it was another drawback of the pandemic.
Today I got my first round of chemo, and it wasn't horrible, but I guess the worst is yet to come. I shouldn't have much hair loss - just thinning, they said. But the biggest side effect of the chemo coctail I am having (mainly called FOLFOX, but also known as the funnier 5-FU, which seems more fitting), is a severe cold sensitivity. They say putting my hand in the refrigerator will make it hurt like an electric shock, and drinking cold water will feel like I'm being choked with ice.
Also, I was given a pump, but I need to get some rest now and will continue later with a discussion of this albatross. I'll try to make another entry tomorrow.
For those not in the know, and to speak the name of my potential killer, I have been diagnosed with metastatic adenocarcinoma stage 4 cancer. If they could find the source of it, they would be able to treat it better, but currently the Batman Investigations (what I am calling all the horrid tests I went through) have turned up empty.
I went to the ER a couple times because of abdominal pain. It was thought that it was inflammation from eating the wrong foods, but started to lead to lots of food being the wrong food, and I would get pain in my chest that I wanted to rule out heart attack. Never any heart problems, so they would give me a GI cocktail and I'd feel better and go.
At the end of Februrary, I went to an Urgent Care instead and he suggested going on to the hospital ER rather than the small ER near my house because they had access to more equipment to check things out. He said he suspected it was gall bladder related.
I went over and got checked in, and they checked things out with the gall bladder, but that all seemed fine. They kept ordering test after test after test, and in the end was told there was some scarring on my liver, and that she was sending me back to my general practitioner to say that I need a liver biopsy and to have them run things, but that this is very serious and get things going.
A visit to my GP later, and she said I should go to a gastroenterologist as I wanted to dump mine after an annoying problem with my previous one involving their staff that I won't go into. Scheduled in two weeks. After having previously taken 6 months or more to get things rolling on thyroid cancer removal, I figured this was par for the course.
When I saw the new gas doc, and I told him I was here to set up a liver biopsy, he looked pissed. I think my GP left him holding the bag and shouldn't have, and shouldn't have waited. He didn't say this, but I could see it in his face. After checking several things out, he came back and said we'd get that rolling and he'd recommend a cancer doctor.
I think the liver biopsy was scheduled a week or so later, right as COVID-19 was gaining a little traction in Colorado, but no shut down yet. After the biopsy, I was told they were sending the results somewhere else and that I would hear back about it.
Meanwhile I met Dr. Moazzum, a man with a pretty thick Indian accent, but one variety my former Kansan old man ears can understand better than others. He was highly rated on websites, and every doctor I mention his name to say he is one of the best, so I feel like I am good hands. Despite his horrible analogies and lack of bedside manner and great lack of information giving.
He said we would wait for the results, but meanwhile he wanted to get a PET scan done. Before the PET, the results came, and they were inconclusive. My gas doc suggested I get a second biopsy, and when I told him about the PET scan, he said let's wait until we see the results, and we'll go from there.
PET scan came back lighting up in multiple areas - abdomen, liver, neck, lung, pancreas, and probably some other places as my brain shut down with the constant emotional whamming of "HOLY SHIT!" going on in my mind. He said it is 92% cancer, and 8% just to be inflammation. Another biopsy would be sought, but left up to the IR doctor.
Found out within the next day or two that they wanted to take another crack at the liver. Got that scheduled, and now COVID-19 really was big everywhere, and we were working from home during this time. I might write something separate later about the effect the pandemic has had on this and some of the scary.
After the liver biopsy, it was known at the name above, even though both my wife and I, through the stupid Zoom meeting, heard Adreno Carcinoma. But we were wrong.
Roll in the number of awful tests to follow, of which my last few weeks have consisted of, including the horrible nightmare inducing pee pee hole scope, an endoscopy, several ultrasounds, and on and on.
I was told recently I would be getting a port, which I didn't know what it was, and would be started on chemotherapy. They wanted to do more tests in the meantime, including a mammogram to rule out, and another ultrasound on my giblets (well, mainly liver and bladder).
After that was scheduled and ready to go for Monday and Tuesday of this week and chemo on Wednesday, I got another call that said I needed to be tested for COVID-19 before I can go into surgery. They scheduled Sunday for that. Now this awful thing is eating in the weekends now too.
We had been holding off from telling the kids until we had a treatment ready to go. It ate away at me keeping it a secret as I am an honest father, and I could tell they knew something was up. We came up with a plan and got advice from a friend who is going through breast cancer treatment as well who has young kids (younger than ours) and her advice on that. It was worse than having the Santa talk, but they handled it pretty well. The questions and upset is still coming but just waiting for some of the bad stuff to hit them.
I tested Sunday for the Coronavirus, and on Monday was feeling warm. Partly because my car had been sitting in the heat, and it was 80 degrees that day, and I also hadn't gotten enough water. I had two appointments Monday - one for the mammogram, and the other for an ultrasound. Due to a misunderstanding, I thought the mammogram needed me to drink a certain amount of water, and needed me to go in with some in my bladder. So when I got to the mammogram appointment, I had a full bladder and was running over 100 degrees Fahrenheit. They cancelled my appointment after testing again after I had set again briefly. I also had a new mask that was tight and hot that I was using. I switched it for a cooler mask and they tested again, and it was under 100, but they said they would not allow the appointment.
The other appointment had right at 100, but then after sitting there a bit was allowed in with 99 degree temp. And I found out I didn't need to hold the water anymore and had a life affirming pee.
The port was put in yesterday, and despite everything I heard and was told, they did not knock me out for it, and had to be awake as they put something into my chest above my heart and wired it up to my jugular vein. That was very unnerving, and the excuse they gave was that they would need to intubate me if they put me under, and said no more, but I figured it was another drawback of the pandemic.
Today I got my first round of chemo, and it wasn't horrible, but I guess the worst is yet to come. I shouldn't have much hair loss - just thinning, they said. But the biggest side effect of the chemo coctail I am having (mainly called FOLFOX, but also known as the funnier 5-FU, which seems more fitting), is a severe cold sensitivity. They say putting my hand in the refrigerator will make it hurt like an electric shock, and drinking cold water will feel like I'm being choked with ice.
Also, I was given a pump, but I need to get some rest now and will continue later with a discussion of this albatross. I'll try to make another entry tomorrow.