In late October 2016 I was diagnosed with glioblastoma multiforme, or GBM, a terminal brain cancer. My symptoms were several problems on my left side. My peripheral vision to the left was impaired. If I was careless I would bump into things on my left because I did not consciously see over there. My vision was fine but the processing was faulty. I had noticed my left leg sometimes lagged behind the right when walking or jogging. I had to be very careful on stairs with this lack of coordination. By the time I visited a doctor in ER, when the tumor was found I was having much difficulty walking (the main reason to see a doctor).
A few weeks later in a major surgery the main tumor was removed. The tumor was at the back lower right of the skull. The brain has functions that cross over so the tumor on the right side affected the left. After a few weeks of healing most of original symptoms had lessened. I could even drive myself to doctor visits.
The brain cancer amounts to a mutation of a brain cell. The brain cancer is present only by the brain and naturally it will grow. The tumor grows tentacles that intertwine with the brain. The tumor and then the surgery result in some damage to the brain. The goal of the initial brain surgery is to remove as much of the cancer as possible. It is not possible to remove all its tentacles without damaging the brain. All of the treatment options involve hindering cancer growth without brain damage. This is why brain cancer is considered terminal because it is not localized and so it only can be hindered never eliminated.
After time for healing after surgery I began my chemotherapy (to hinder cancer growth) and my radiation therapy (to blast any larger cancer nodes). Within only a few weeks the chemo affected my bone marrow so then my blood had few red blood cells (hold oxygen, few white blood cells (fight infections), and few platelets (for clotting). The chemo was stopped immediately but it took many months for the marrow to recover. Along the way I had many complications. Brain cancer is complex so I expect it is unique by individual. Though I still have weekly hospital visits for the most part I am almost 'normal' again. I cannot walk as fast as before because my left / right legs are not perfectly coordinated. I just walk slower to stay stable. I certainly will not drive again.
11/16/2018 addition: The ongoing treatment to prevent further cancer growth while dealing with medication combinations has consequences. Each dose of chemo, though reduced several times, stresses the kidneys; eventually their performance degrades. A prescription for heart rhythm (afib) had iodine so one possible side effect is a thyroid problem. Mine is now damaged so I will always take a thyroid hormone. Each medication has a list of possible side effects; sometimes I exhibit one, but others I won't. Some side effects are more serious than others. Each time a side effect surfaces a change in medication or dose is pursued. I appreciate the medical industry is not close to truly understanding the human body. After seeing so many drug ads on a television I can only suspect each drug is found for a particular symptom and eventually its users will reveal the side effects and their severity.
My career was in factory automation where everything critical must be measurable and the application reacts to those recent measurements to maintain the machine’s correct performance.
I can appreciate for some disciples like dentistry or dermatology dealing with one organ is less complicated than a multiple organ situation like cancer
I get a weekly CBC and CMP (Comprehensive Blood Count and Comprehensive Metabolic Panel ) so the doctors can reference those metrics frequently but the current knowledge base is not developed enough to solve all the possible symptoms with this set. I can only assume the drug manufacturers do not document how their drug affects different metrics (maybe new drugs need new metrics) so other medical professionals could understand combinations of symptoms and metrics. I am probably very naive but I feel the human health care industry is not capable yet of truly delivering consistent quality for a serious problem like cancer. I had to experience changes in medications and doses by trial and error.
A common expression is fighting cancer. I cannot feel I am in a fight. A fight involves attacks and counterstrikes where the opponent must suffer more than you until he/she/it surrenders or else you lose. A competitive fight would have specific rules for the opponents. I do not see this cancer this way, as a fight.
The brain cancer is a part of me. The brain apparently made a mistake and created a cancer. The cancer is not something that invaded my body but rather arose at one of the organs. Cancer has no vaccine to help antibodies 'fight it off' as with infections. Cancer prevention requires an understanding of how the organ can create this uncommon growth. I suspect environmental factors were involved in my case. As an electrical engineer working on machine tools I visited many factories that no doubt had many toxic chemicals. I frequently flew to job sites so I was often subject to more X-rays at altitude and to more radiation from airport scanners. No one knows the reason for this particular cancer or why it arose in its location.
I am not in a fight with cancer. I can't beat it up into surrender.
The cancer just follows its nature which is to grow. There is no known mechanism to stop or eliminate this cancer. It can only be hindered. The complex cancer can even adapt to its obstacles.
If I have a major problem with my car I take it to a competent car repair business, and I rely on their expertise to diagnose and fix the problems. I would never say to the technician I am with him in this fight to fix the car. I must depend on someone else to help with a difficult challenge.
Cancer treatment requires a plan executed by competent medical personnel to hinder the cancer growth. I tell the doctors how I am doing; these discussions are also critical for managing my own health during treatment. Blood tests, MRI scans, and ultrasounds provide more updated information for treatment adjustments. Since the original diagnosis I have been served by several doctors of different specialties and by many nurses. My older sister is a retired nurse (with a very helpful background in prescriptions and procedures) and has been critical to my progress (being with me through so much).
My life expectancy directly depends on the effectiveness of the cancer treatment.
As with many complex problems in human society success is achieved with well coordinated teamwork. This observation also applies to cancer treatment.
The comments above are based on my conditions and experiences. I expect others will see cancer differently.
Even though America spends billions on its military to implement war crimes in foreign lands for geopolitical gains, America has no national health care program. Instead health insurance companies determine how much health care can be obtained and at what cost to the family or individual. This is a total disgrace but our global military and financial empire remains the priority for our corrupt corporatist government.
If I did not have adequate insurance to cover my expenses for my brain cancer treatment then I would certainly have a fight on my hands.
I would be truly fighting for survival. Without adequate medical care I would be forced to do whatever it took to relieve the pain and suffering without ever truly addressing the actual medical problems.
This would not be a fight with cancer but rather a struggle dealing with symptoms that could have been prevented or addressed with medical care. Society would have failed in support me in my tme of need. I am truly sorry for anyone in those circumstances.
The life expectancy for GBM with no treatment is only about 16 months. With effective treatment I should have more years after that. I am 24 months at the time of this update (11/2018) and the cancer is stable now (though of course changes are unpredictable).
I worked for a large company and one significant benefit was a very good health insurance package with a fairly low annual deductible and a high lifetime total coverage. I am sure my medical expenses were outrageous before insurance coverage. I had brain surgery and other special medical procedures (like several MRIs, many IV transfusions), several specialized doctors working together on my case, several trips in an ambulance to the emergency room after a collapse, many prescriptions, many office visits, many days in a hospital with monitoring by nurses. I could do all this without too much financial worry, though all was not 'free.' With less coverage I would be in dire trouble.
I am truly fortunate I am still here.
The lack of readily available effective medical care for so many Americans is a real tragedy. A national health care program should be practical for the largest economy in the world.
created - Feb 2018
last change - 11/16/2018
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