I Have Cancer
I was diagnosed with stage 4 Chronic Lymphatic Leukemia (CLL) about 4 1/2 years ago. Further tests showed that my cancer cells were unmutated.
Although "unmutated" sounds good, it is actually bad, because it means that each cancer cell is basically a cancer stem cell, rather than simply random mutations. Once I found that my CLL cells were unmutated, I looked at median - half - survival periods, untreated, on the internet, For mutated cells, the median survival period was about 25 years; for unmutated cells, the median survival period was only about 7 years.
I got into a two year clinical trial at the James Cancer Center at Ohio State University in Columbus, Ohio (485 miles south of my home) under Dr. John Byrd - widely regarded as the top CLL Doctor in the country. My participation in the study officially began in December of 2013.
I was told that by volunteering for the study, I could continue to receive the drug when the study was over as long as I continued to come to the James Cancer Center every month so that my progress could be followed.
The first two months of the study, I had to be at OSU every Monday morning at 7:30 AM. Actually, I picked the day and the time so that I could drive down on Sunday, have blood drawn on Monday morning, get pills for the next 28 days, drive home Monday afternoon/evening, and return to work as a mover/truck driver on Tuesday morning.
After the first two months, I only had to drive to Columbus once a month - every fourth Monday. Thus, I only lost one day of work a month.
The study officially ended in December 2015. Prior to beginning the study, and prior to entering what I call "post-study", they did all kinds of tests - CAT scans, bone marrow biopsies, etc.
After the official end of the study, I was told that when I began the study, 76% of my immune cells were cancerous, while when the two-year study ended, only 14% of the immune cells were still cancerous. They also told me that within a year - which would have been a year ago December, the cancerous cells would be undetectable.
Undetectable is a good word when applied to cancer. Undetectable, however, does not mean cured. There will always be a few of the cancer stem cells floating about just eaiting for a chance - I know that is anthropomorphisizing the cancer cells, so forgive me - to proliferate again.
Given these circumstances, I would have had to be an idiot to quit the program. Not being an idiot, I plan to keep coming to OSU for treatment until the day I die - of old age!!!
Tomorrow, is my treatment day. I drove the 485 miles down to Columbus - about 200 miles of which were in a snow/ice storm - earlier today. I got here about 9:30 PM, and am getting ready for bed.
It's about 12:30 AM here, and I need to get up at 6:00 AM to be at the James Cancer Center at 7:30 AM. After having a needle in my arm for about two hours, I should be on the way home by 10:30 AM or so.
The only other place the study was offered was Anderson Cancer Clinic in Houston, Texas - roughly 1,500 miles from my home. Though, I would have happily participated in the study there if necessary, a 16 hour round-trip drive was much preferable to a roughly 60 hour round-trip drive.
So, life is great, and I thumb my nose at my cancer.
Actually, I was never upset or angry or worried about having cancer. I just got on the internet and checked out my options.
I really believe that if I had grieved about the cancer, and had wasted time with the supposed five steps of the grieving process - denial, anger, bargaining, some other shit, and finally acceptance - I could have died from my CLL before I researched my options and entered the clinical trial.
To be honest, I do not understand why so many people are afraid of dying! If you really look at it honestly, you would have to conclude that birth is a death sentence. But, why is that frightening? The main question with death isn't "If", it is "When!"
And, this clinical trial has pushed "when" off to the far future. But, if I were to die tomorrow - hell, I could be in an accident on my way home - who cares?
Enjoy every day of your life, and don't WASTE your life worrying about the fact that it will end. Worrying about it will not keep death at bay!
Now, I have to get my beauty sleep. I am almost 67 years of age, so I REALLY need my beauty sleep!
Quakertrucker
Although "unmutated" sounds good, it is actually bad, because it means that each cancer cell is basically a cancer stem cell, rather than simply random mutations. Once I found that my CLL cells were unmutated, I looked at median - half - survival periods, untreated, on the internet, For mutated cells, the median survival period was about 25 years; for unmutated cells, the median survival period was only about 7 years.
I got into a two year clinical trial at the James Cancer Center at Ohio State University in Columbus, Ohio (485 miles south of my home) under Dr. John Byrd - widely regarded as the top CLL Doctor in the country. My participation in the study officially began in December of 2013.
I was told that by volunteering for the study, I could continue to receive the drug when the study was over as long as I continued to come to the James Cancer Center every month so that my progress could be followed.
The first two months of the study, I had to be at OSU every Monday morning at 7:30 AM. Actually, I picked the day and the time so that I could drive down on Sunday, have blood drawn on Monday morning, get pills for the next 28 days, drive home Monday afternoon/evening, and return to work as a mover/truck driver on Tuesday morning.
After the first two months, I only had to drive to Columbus once a month - every fourth Monday. Thus, I only lost one day of work a month.
The study officially ended in December 2015. Prior to beginning the study, and prior to entering what I call "post-study", they did all kinds of tests - CAT scans, bone marrow biopsies, etc.
After the official end of the study, I was told that when I began the study, 76% of my immune cells were cancerous, while when the two-year study ended, only 14% of the immune cells were still cancerous. They also told me that within a year - which would have been a year ago December, the cancerous cells would be undetectable.
Undetectable is a good word when applied to cancer. Undetectable, however, does not mean cured. There will always be a few of the cancer stem cells floating about just eaiting for a chance - I know that is anthropomorphisizing the cancer cells, so forgive me - to proliferate again.
Given these circumstances, I would have had to be an idiot to quit the program. Not being an idiot, I plan to keep coming to OSU for treatment until the day I die - of old age!!!
Tomorrow, is my treatment day. I drove the 485 miles down to Columbus - about 200 miles of which were in a snow/ice storm - earlier today. I got here about 9:30 PM, and am getting ready for bed.
It's about 12:30 AM here, and I need to get up at 6:00 AM to be at the James Cancer Center at 7:30 AM. After having a needle in my arm for about two hours, I should be on the way home by 10:30 AM or so.
The only other place the study was offered was Anderson Cancer Clinic in Houston, Texas - roughly 1,500 miles from my home. Though, I would have happily participated in the study there if necessary, a 16 hour round-trip drive was much preferable to a roughly 60 hour round-trip drive.
So, life is great, and I thumb my nose at my cancer.
Actually, I was never upset or angry or worried about having cancer. I just got on the internet and checked out my options.
I really believe that if I had grieved about the cancer, and had wasted time with the supposed five steps of the grieving process - denial, anger, bargaining, some other shit, and finally acceptance - I could have died from my CLL before I researched my options and entered the clinical trial.
To be honest, I do not understand why so many people are afraid of dying! If you really look at it honestly, you would have to conclude that birth is a death sentence. But, why is that frightening? The main question with death isn't "If", it is "When!"
And, this clinical trial has pushed "when" off to the far future. But, if I were to die tomorrow - hell, I could be in an accident on my way home - who cares?
Enjoy every day of your life, and don't WASTE your life worrying about the fact that it will end. Worrying about it will not keep death at bay!
Now, I have to get my beauty sleep. I am almost 67 years of age, so I REALLY need my beauty sleep!
Quakertrucker
70-79, M
