My journey through the Medical-Industrial-Pharmaceutical-Complex.
(Mirror at my substack page: https://georgebailey.substack.com/p/take-the-chemo-or-die?sd=pf)
I took the news that I had been diagnosed with cancer in September of 2021 better than I had imagined. I thought it might fill me with terror This was the first time I had ever been diagnosed with a disease of this seriousness. Up to this point I had not had a cold, flu or a fever in 15 years. My worries regarding cancer were few with my consistent good health, a strong immune system and close relatives that never experienced internal cancers.
Nevertheless, getting such a diagnosis feels as if your house has been broken into and the security of it violated. Your safe place, your physical body, the place where the soul has a home, is not safe anymore. Afterward, any minor ache seemed like a warning sign of some impending trouble. After a while, well over a year actually, I learned to shake if off and go on living my life as I had always done.
It started in January first of 2021 when I noticed my urine was brown. I was greatly disturbed by this and I checked online to see that could be a result of dehydration and drinking more water would correct the discoloration. I did drink more and it did improve. Only to come rounding back in a few months, off and on.
Later in the year it turned to blood. Which was even a greater shock and my blood pressure shot up to dangerous, near stroke levels as I was told by a nurse practitioner. No more time to waste, I started the process of meeting my urologist Dr. Michael Grable, whom I found to be a genuinely pleasant man dressed in overalls resembling a garage mechanic. Next commenced the exams of bladder, kidneys, blood, etc. The bladder led to the source of trouble—a small tumor which required surgery in October.
The surgery was meant to be a straightforward process at a day surgery clinic. In and out early in the morning. All went smoothly except the bleeding which did not stop and eventually led me to the ER where it was discovered the bleeding was causing blood clots. I was hospitalized for a long week having my bladder irrigated to break loose the clots. I was never warned it could happen! I came close to a transfusion, but thankfully the saline solution worked. I had a long recovery process regaining my strength and battling a UTI infection that went on for weeks.
The Chemo Process
After sufficiently recovered, I conferenced with my urologist where I was told my options. One, was basically to do a round of chemotherapy which would only give a 20% chance of the cancer returning. Two, do not proceed with the chemo and have a 70% chance of a return. And third, no nothing and die in two years. Sounded scary and depressing. I didn’t like the prospects of these options and needed time to think it over. One issue that bothered me was the lack of options. This resembles what I would have been told 20 years ago and quite possibly my doctor did. Where was the advancement in treatment? As I would find out, and will be shown later on in this piece, I was given inaccurate information regarding the efficiency of this type of treatment.
After much thought I decided on the treatments since the chemistry being used, gemcitabine (gemcitabine hydrochloride), was not nuclear based, the side effects were minimal and is an antiviral found to be effective in destroying cancer cells. Also, the application was simple. Gemcitabine is fed into the bladder via a catheter (intravesical instillation). It’s urinated out after 2 hours. Overall, throughout the year of 2022, I had 15 treatments with no major side effects.
Starting in January of 2023 I had a bladder exam and everything looked fine. During the time I had had four and everything looked good. That is why I was surprised when Dr. Grable stated he wanted to continue them—there more. I said nothing about it at the time as I am good about obeying doctor’s orders. But it started me thinking.
What is the end game here? At what point do we declare victory? Yes, I should have asked and likewise, my doctor could have told me. But when you are a rookie with potentially dangerous diseases such as cancer, you don’t know where to start or what to ask. You are in a vulnerable place and being told scary things. Only the basics are generally revealed. It would be nice if patients had a medical advocate to walk you through the labyrinth and ask the right questions in your stead. But we are not there yet.
I had decided to take a more natural, holistic approach while still keeping in mind to have regular exams to check progress.
After much thought I canceled treatments.
Afterward, I got something in the mail.
The Letter
Several weeks later after canceled treatments a letter arrived. It was from Dr. Grable informing me if I didn’t reinstate the Gemcitabine treatments I would no longer be a patient of his. It was quite a surprise! As a friend said, my urologist went from “recommendation to ultimatum.” Indeed. I thought as a patient I had a right to determine my own course of treatment and make the best choices I could with the information at hand. And that choice would not result in punishment. But I was wrong. Instead, I was kicked off the train for being uppity.
In a way I had been uppity, from a medical industry rooted in man-made chemistry. One can only wonder at what pressures the physicians employed by these medical corporations are under. I was never asked why I made my choice. Apparently, as before, there are no other options and certainly not under this arranged system. And besides, my urologist didn’t care. If he did, he would want to consult with me about this. Ultimately, he’s a company man. Besides, Big Pharma rules. Just take note of their advertising. It’s all over the place, day and night and supplies networks with a steady income.
I was given the choice of calling the office to reinstate the appointments or ask questions. Notice this is talking to the staff, not the urologist. He can speak directly to you, but you can’t talk directly to him. Actually, you only speak to a doctor in the examination room. I remember a time when your doctor would call and give you the results of a test. How quaint. A thing of the past. Now they keep their distance from the rabble. I never called in.
One important thing to consider is Gemcitabine (without health insurance) costs $373.99 per ounce and they fill your bladder up with it. When I canceled those appointments thousands of dollars were lost to Advanced Urology. I am sure it doesn’t look good. I would judge this to be a factor in the eroding of the patient/physician relationship.
Taking A Deeper Dive
So at last I got around to doing the research I should have been doing from the start. And I ran across some surprising issues.
As I said earlier, I was told by my urologist that if I did the chemotherapy there would only give a 20% chance of the cancer returning or a 70% chance of it returning if I did nothing. I was given no end date for receiving the treatments. But in my research I never found the range I was told. Instead, I found totally different figures from a double-blind study published in JAMA. As follows:
“Among all of the 406 patients in the clinical trial, the use of gemcitabine after surgery reduced the rate of the cancer returning. Over 4 years, the recurrence rate was 35% in the gemcitabine group, compared with 47% in the placebo group, the researchers reported in JAMA on May 8.”
The 4 year period was new to me as I was not informed there was a time range for the gemcitabine to be effective in. It goes on:
“Participants were recruited and randomly assigned to a treatment group prior to undergoing surgery, which is needed to determine whether a patient has low-grade or high-grade disease. Over the course of the trial, the researchers determined that 215 patients had low-grade disease.
Among this group, 34 of 102 patients receiving gemcitabine (34%) had a recurrence, compared with 59 of 113 patients receiving placebo (54%)—a 37% relative reduction in the recurrence rate.”
Low-grade would be my category since my cancer was caught early enough and did not penetrate the bladder wall.
On the same page another chemotherapy drug is mentioned, mitomycin C. I was not aware of it for treatment. It’s a bit more strident and can cause rashes if it comes into contact with skin. However, the report seemed to favor gemcitabine as it has proven effective in reducing the chances of recurrences and is more easily tolerated by the body.
Overall, I was disappointed at the information I was told at the time and I have no explanation as to why this was so. It is obviously of utter importance for a patient to have the best information available. A 20% chance of recurrence over an unknown time range compared to a 34% or 35% chance over 4 years is a whole different understanding of how the treatment works. A pity I had to do my own search to discover this after the fact.
In Closing
If cancer is an immune system failure, what about discussion of the immune system, it’s important to overall health and ways to strengthen it for optimum efficiency and well being? In my journey through this, I was told nothing regarding the importance of the immune system for health, as if this vital system for the body’s defense against contagions doesn’t exist. So the first cause is not addressed, only the mechanics of repair.
It is as if there were no other choices. What about other therapies? Or taking a more holistic approach? That is the place I wanted to go and the reason for my canceling of the appointments. In my research I have found there are other choices. And I will pursue them.
So this was a unique experience from the beginning, to hardships, to the surprising end. I do appreciate what Dr. Grable did for me. He after all, saved my life and I will always be grateful. But since he is not a King nor I, his subject, will move on to more greater options for my health rather than, “Take the chemo or die.”
Sources
Gemcitabine efficiency
https://www.cancer.gov/news-events/cancer-currents-blog/2018/gemcitabine-bladder-cancer-recurrence
Gemcitabine trials
https://pubmed.ncbi.nlm.nih.gov/29801011/
Gemcitabine Hydrochloride - NCI
https://bladdercancer.net/living/bcg-gemcitabine
Gemcitabine cost
https://www.singlecare.com/prescription/gemcitabine-hcl
Other treatments, BCG
https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2022-04864&r=1
I took the news that I had been diagnosed with cancer in September of 2021 better than I had imagined. I thought it might fill me with terror This was the first time I had ever been diagnosed with a disease of this seriousness. Up to this point I had not had a cold, flu or a fever in 15 years. My worries regarding cancer were few with my consistent good health, a strong immune system and close relatives that never experienced internal cancers.
Nevertheless, getting such a diagnosis feels as if your house has been broken into and the security of it violated. Your safe place, your physical body, the place where the soul has a home, is not safe anymore. Afterward, any minor ache seemed like a warning sign of some impending trouble. After a while, well over a year actually, I learned to shake if off and go on living my life as I had always done.
It started in January first of 2021 when I noticed my urine was brown. I was greatly disturbed by this and I checked online to see that could be a result of dehydration and drinking more water would correct the discoloration. I did drink more and it did improve. Only to come rounding back in a few months, off and on.
Later in the year it turned to blood. Which was even a greater shock and my blood pressure shot up to dangerous, near stroke levels as I was told by a nurse practitioner. No more time to waste, I started the process of meeting my urologist Dr. Michael Grable, whom I found to be a genuinely pleasant man dressed in overalls resembling a garage mechanic. Next commenced the exams of bladder, kidneys, blood, etc. The bladder led to the source of trouble—a small tumor which required surgery in October.
The surgery was meant to be a straightforward process at a day surgery clinic. In and out early in the morning. All went smoothly except the bleeding which did not stop and eventually led me to the ER where it was discovered the bleeding was causing blood clots. I was hospitalized for a long week having my bladder irrigated to break loose the clots. I was never warned it could happen! I came close to a transfusion, but thankfully the saline solution worked. I had a long recovery process regaining my strength and battling a UTI infection that went on for weeks.
The Chemo Process
After sufficiently recovered, I conferenced with my urologist where I was told my options. One, was basically to do a round of chemotherapy which would only give a 20% chance of the cancer returning. Two, do not proceed with the chemo and have a 70% chance of a return. And third, no nothing and die in two years. Sounded scary and depressing. I didn’t like the prospects of these options and needed time to think it over. One issue that bothered me was the lack of options. This resembles what I would have been told 20 years ago and quite possibly my doctor did. Where was the advancement in treatment? As I would find out, and will be shown later on in this piece, I was given inaccurate information regarding the efficiency of this type of treatment.
After much thought I decided on the treatments since the chemistry being used, gemcitabine (gemcitabine hydrochloride), was not nuclear based, the side effects were minimal and is an antiviral found to be effective in destroying cancer cells. Also, the application was simple. Gemcitabine is fed into the bladder via a catheter (intravesical instillation). It’s urinated out after 2 hours. Overall, throughout the year of 2022, I had 15 treatments with no major side effects.
Starting in January of 2023 I had a bladder exam and everything looked fine. During the time I had had four and everything looked good. That is why I was surprised when Dr. Grable stated he wanted to continue them—there more. I said nothing about it at the time as I am good about obeying doctor’s orders. But it started me thinking.
What is the end game here? At what point do we declare victory? Yes, I should have asked and likewise, my doctor could have told me. But when you are a rookie with potentially dangerous diseases such as cancer, you don’t know where to start or what to ask. You are in a vulnerable place and being told scary things. Only the basics are generally revealed. It would be nice if patients had a medical advocate to walk you through the labyrinth and ask the right questions in your stead. But we are not there yet.
I had decided to take a more natural, holistic approach while still keeping in mind to have regular exams to check progress.
After much thought I canceled treatments.
Afterward, I got something in the mail.
The Letter
Several weeks later after canceled treatments a letter arrived. It was from Dr. Grable informing me if I didn’t reinstate the Gemcitabine treatments I would no longer be a patient of his. It was quite a surprise! As a friend said, my urologist went from “recommendation to ultimatum.” Indeed. I thought as a patient I had a right to determine my own course of treatment and make the best choices I could with the information at hand. And that choice would not result in punishment. But I was wrong. Instead, I was kicked off the train for being uppity.
In a way I had been uppity, from a medical industry rooted in man-made chemistry. One can only wonder at what pressures the physicians employed by these medical corporations are under. I was never asked why I made my choice. Apparently, as before, there are no other options and certainly not under this arranged system. And besides, my urologist didn’t care. If he did, he would want to consult with me about this. Ultimately, he’s a company man. Besides, Big Pharma rules. Just take note of their advertising. It’s all over the place, day and night and supplies networks with a steady income.
I was given the choice of calling the office to reinstate the appointments or ask questions. Notice this is talking to the staff, not the urologist. He can speak directly to you, but you can’t talk directly to him. Actually, you only speak to a doctor in the examination room. I remember a time when your doctor would call and give you the results of a test. How quaint. A thing of the past. Now they keep their distance from the rabble. I never called in.
One important thing to consider is Gemcitabine (without health insurance) costs $373.99 per ounce and they fill your bladder up with it. When I canceled those appointments thousands of dollars were lost to Advanced Urology. I am sure it doesn’t look good. I would judge this to be a factor in the eroding of the patient/physician relationship.
Taking A Deeper Dive
So at last I got around to doing the research I should have been doing from the start. And I ran across some surprising issues.
As I said earlier, I was told by my urologist that if I did the chemotherapy there would only give a 20% chance of the cancer returning or a 70% chance of it returning if I did nothing. I was given no end date for receiving the treatments. But in my research I never found the range I was told. Instead, I found totally different figures from a double-blind study published in JAMA. As follows:
“Among all of the 406 patients in the clinical trial, the use of gemcitabine after surgery reduced the rate of the cancer returning. Over 4 years, the recurrence rate was 35% in the gemcitabine group, compared with 47% in the placebo group, the researchers reported in JAMA on May 8.”
The 4 year period was new to me as I was not informed there was a time range for the gemcitabine to be effective in. It goes on:
“Participants were recruited and randomly assigned to a treatment group prior to undergoing surgery, which is needed to determine whether a patient has low-grade or high-grade disease. Over the course of the trial, the researchers determined that 215 patients had low-grade disease.
Among this group, 34 of 102 patients receiving gemcitabine (34%) had a recurrence, compared with 59 of 113 patients receiving placebo (54%)—a 37% relative reduction in the recurrence rate.”
Low-grade would be my category since my cancer was caught early enough and did not penetrate the bladder wall.
On the same page another chemotherapy drug is mentioned, mitomycin C. I was not aware of it for treatment. It’s a bit more strident and can cause rashes if it comes into contact with skin. However, the report seemed to favor gemcitabine as it has proven effective in reducing the chances of recurrences and is more easily tolerated by the body.
Overall, I was disappointed at the information I was told at the time and I have no explanation as to why this was so. It is obviously of utter importance for a patient to have the best information available. A 20% chance of recurrence over an unknown time range compared to a 34% or 35% chance over 4 years is a whole different understanding of how the treatment works. A pity I had to do my own search to discover this after the fact.
In Closing
If cancer is an immune system failure, what about discussion of the immune system, it’s important to overall health and ways to strengthen it for optimum efficiency and well being? In my journey through this, I was told nothing regarding the importance of the immune system for health, as if this vital system for the body’s defense against contagions doesn’t exist. So the first cause is not addressed, only the mechanics of repair.
It is as if there were no other choices. What about other therapies? Or taking a more holistic approach? That is the place I wanted to go and the reason for my canceling of the appointments. In my research I have found there are other choices. And I will pursue them.
So this was a unique experience from the beginning, to hardships, to the surprising end. I do appreciate what Dr. Grable did for me. He after all, saved my life and I will always be grateful. But since he is not a King nor I, his subject, will move on to more greater options for my health rather than, “Take the chemo or die.”
Sources
Gemcitabine efficiency
https://www.cancer.gov/news-events/cancer-currents-blog/2018/gemcitabine-bladder-cancer-recurrence
Gemcitabine trials
https://pubmed.ncbi.nlm.nih.gov/29801011/
Gemcitabine Hydrochloride - NCI
https://bladdercancer.net/living/bcg-gemcitabine
Gemcitabine cost
https://www.singlecare.com/prescription/gemcitabine-hcl
Other treatments, BCG
https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2022-04864&r=1
