I am in a rough place right now. I am tired, and sad, and a little bitter. I am trying to go through the motions, and hope it will be alright, but am having a tough time putting on a cheery face. I am, as a result, also having a hard time ignoring the YELLING CAPS LOCK FUNCTION ON MY COMPUTER, either on my blog or my personal emails. I am eating brownies in numbers not recommended by either the American Medical Association or the National Diabetes Board.
The reason for the angst, the CRAZY CAPS TYPING and the chocolate binges: As of two weeks ago, I no longer have a simple neoplasm, mass, or lesion. I "officially" have a non-simple diagnosis: Brain Tumor (inoperable). My job, my life: it is all about semantics.
I am on a watch-and-wait treatment plan for a ... Jesus Christ ... brain tumor. Did I mention the inoperable part? How do doctors even consider something a "treatment plan" if there is no actual treating being done? Nationally Ranked Tumor Board #1 votes scans every three months. Nationally Ranked Neurosurgeon #2 votes scans every year. The only solid consensus is that surgery, given the tumor location, is not viable. As explained to me, over and over, cutting through all that "good brain" will likely kill or disable me. Both options would impair my ability to enjoy either fudgey baked goods OR THE CAPS LOCK FUNCTION.
My June 2008 MRI showed a mass that measured twice as large as it did in November 2007, though there is some debate as to whether that is a significant measurement. November scans were done at UMD. The most recent, at Hopkins. Not even the MRI machines can agree.
None of the neuro-people even know what kind of tumor it is because tumor type cannot be definitively diagnosed without a surgical biopsy. But - they have all guessed (in an educated fashion, I would hope) - AND NONE OF THEM HAVE SAID THE SAME THING. One of my first opinions had me dead at six months, another in the same time period was going to send me home to forget about it and watch "Friends" reruns -- something about laughter and medicine. My cell phone has SIX neurosurgeons' phone numbers programmed into it. I would wager that the general, non-tumored public does not even KNOW a single neurosurgeon.
I guess I should get on with my life, my job, my kid, my fattening desserts and MY RECENT ENJOYMENT OF THE CAPS LOCK KEY, but ... I almost drove into my son's school (more on that later), sometimes I cannot see - only for a second, like a long blink (more on that later), I am forgetting common words, like broccoli (more on that later), I am having large muscle spasms (more on that later). And the fatigue ... the fatigue ... like a bad case of the flu with a side of the flu, at times, I feel like I am seven thousand years old (no more on that later). None of this seems to excite any of the neurosurgical people, probably because I am much much better off than 99.9% of people with brain tumors. But for how long? HOW LONG!? There is no concrete answer. Months, years, decades?
I posted the essay below because it explains the nebulous, frustrating and inexplicable medical reality better than I can right now, and people, who care, keep asking (thank you, to those who ask - and care - I appreciate it).
Bravo to the eloquent author, Neal P. Levitan, Esq. Please take it away, sir:
Copyrighted material: National Brain Tumor Society (2008)
Survivor Stories - Searching for Consensus
By Neal P. Levitan, Esq.
The dictionary defines consensus as a "collective opinion" and "general opinion or accord." My very first encounter with an irresolute opinion was that of a neurologist reading a CT scan in 1982, who diagnosed me as having either a stroke, dementia, or a brain tumor. The diagnosis was further refined after a week-long stay and many additional tests at the Massachusetts General Hospital when I was told I had a tumor in my left temporal lobe that appeared to be very close to the speech center and right motor strip; it was probably a slow growing astrocytoma or mixed glioma, and was probably infiltrating the "good" brain cells with its characteristic octopus-like tentacles; thus the risk of a bad surgical result outweighed potential benefits. The conclusion: I had an inoperable brain tumor. A wait and observe approach was recommended. Although I had tremendous faith and respect for my doctors, I felt I had to take my own initiative to investigate my disease and to manage my own health.
Thus began an extensive search for answers. With the help of a loving family and supportive friends, I garnered the strength to seek additional opinions, and to hopefully find the latest and best treatment modality. I quickly realized that such a search was very idealistic: there was no collective opinion or single new treatment. Rather, I encountered vast disagreement about my disease and the proper course of action to defeat it. This was, at first, very unnerving!
The myriad of treatment options suggested ranged from immediately starting radiation therapy to having a biopsy to determine the exact pathology. One doctor said that "the tumor was there to grow," and recommended immediate partial resection rather than waiting until it became more infiltrative and perhaps more aggressive. Another warned that a partial resection in and of itself may make the remaining tumor more aggressive. Still others recommended new (and in the mid 1980's, experimental) forms of radiosurgery, and one doctor said that regardless of what action I took, I would not be alive in five years.
I also struggled through numerous medical periodicals and research studies, many of which had varied results and conclusions. This further confounded my attempt to ascertain the primary treatment available for my disease.
With all of my research and through all of my meetings and conversations with some of the most renowned neurologists and neurosurgeons in the country, I could not find consensus. What was imparted to me during this process was a wealth of information. With each new consult I learned more about the disease and became better equipped to ask more informed questions. Becoming well acquainted with the different schools of thought on my tumor type, I came to view each new resource and the multitude of information collected as part of a learning curve that would assist me in making the most important decision of my life. While I could easily have been frustrated by the lack of consensus, there was some benefit from all of the disagreement in that I learned about the risks and potential benefits of each treatment option. In the end it was this process that enabled me to evaluate the treatment choice with which I would be most comfortable.
Regrettably, not everyone diagnosed with a brain tumor has the opportunity of time; some are faced with life-and-death decisions which may be ultimately made for them and not by them. For many patients, however, there is some opportunity to learn more about the disease and varied treatment options. The fact that different protocols are available may be regarded as a positive factor; considering that apart from statistics that tend to eclipse the individuality of a person and his illness, there really is no way to guarantee how a particular treatment will affect an individual or his disease.
The challenge of coping with the absence of consensus certainly can be daunting. At first it can seem to pre-empt all hope for recovery. It may be possible to mitigate this negative spiral by focusing on the management of your situation, hopefully with the assistance of others that you are comfortable with. First, it is critically important to maintain a positive attitude and never dismiss the power of hope. Next, it is necessary to secure as much information as possible from reliable sources, including unbiased caregivers as well as patients and families who have knowledge and experience with the same tumor classification. It is similarly important to logically discuss and analyze all of the information obtained with family and trusted friends.
The final step, and in my opinion the most crucial, should be accomplished with a delicate balance of determination and respect. Challenge your physicians to respond to the opinions of their colleagues as well as to your own concerns, so that all of the issues are clear to you or someone you can rely on. Only then will you be armed with the resources necessary to make a decision in the absence of consensus.
Today, I am a thirteen year post-treatment survivor. Fortunately, for those going through a similar experience to mine, the combination of specialized organizations such as the Brain Tumor Society and the internet revolution make it much easier to access information about treatment options, to locate other patients with similar diseases, and to receive support and guidance, than ever before. Such organizations exist to provide help and purvey hope. Hope is an invaluable asset to us all in coping with illness, as well as with the frustration of not being able to identify a single best treatment option. And, hope becomes even more vital when affirmation as to the most appropriate measures for managing your disease does not exist.
The reason for the angst, the CRAZY CAPS TYPING and the chocolate binges: As of two weeks ago, I no longer have a simple neoplasm, mass, or lesion. I "officially" have a non-simple diagnosis: Brain Tumor (inoperable). My job, my life: it is all about semantics.
I am on a watch-and-wait treatment plan for a ... Jesus Christ ... brain tumor. Did I mention the inoperable part? How do doctors even consider something a "treatment plan" if there is no actual treating being done? Nationally Ranked Tumor Board #1 votes scans every three months. Nationally Ranked Neurosurgeon #2 votes scans every year. The only solid consensus is that surgery, given the tumor location, is not viable. As explained to me, over and over, cutting through all that "good brain" will likely kill or disable me. Both options would impair my ability to enjoy either fudgey baked goods OR THE CAPS LOCK FUNCTION.
My June 2008 MRI showed a mass that measured twice as large as it did in November 2007, though there is some debate as to whether that is a significant measurement. November scans were done at UMD. The most recent, at Hopkins. Not even the MRI machines can agree.
None of the neuro-people even know what kind of tumor it is because tumor type cannot be definitively diagnosed without a surgical biopsy. But - they have all guessed (in an educated fashion, I would hope) - AND NONE OF THEM HAVE SAID THE SAME THING. One of my first opinions had me dead at six months, another in the same time period was going to send me home to forget about it and watch "Friends" reruns -- something about laughter and medicine. My cell phone has SIX neurosurgeons' phone numbers programmed into it. I would wager that the general, non-tumored public does not even KNOW a single neurosurgeon.
I guess I should get on with my life, my job, my kid, my fattening desserts and MY RECENT ENJOYMENT OF THE CAPS LOCK KEY, but ... I almost drove into my son's school (more on that later), sometimes I cannot see - only for a second, like a long blink (more on that later), I am forgetting common words, like broccoli (more on that later), I am having large muscle spasms (more on that later). And the fatigue ... the fatigue ... like a bad case of the flu with a side of the flu, at times, I feel like I am seven thousand years old (no more on that later). None of this seems to excite any of the neurosurgical people, probably because I am much much better off than 99.9% of people with brain tumors. But for how long? HOW LONG!? There is no concrete answer. Months, years, decades?
I posted the essay below because it explains the nebulous, frustrating and inexplicable medical reality better than I can right now, and people, who care, keep asking (thank you, to those who ask - and care - I appreciate it).
Bravo to the eloquent author, Neal P. Levitan, Esq. Please take it away, sir:
Copyrighted material: National Brain Tumor Society (2008)
Survivor Stories - Searching for Consensus
By Neal P. Levitan, Esq.
The dictionary defines consensus as a "collective opinion" and "general opinion or accord." My very first encounter with an irresolute opinion was that of a neurologist reading a CT scan in 1982, who diagnosed me as having either a stroke, dementia, or a brain tumor. The diagnosis was further refined after a week-long stay and many additional tests at the Massachusetts General Hospital when I was told I had a tumor in my left temporal lobe that appeared to be very close to the speech center and right motor strip; it was probably a slow growing astrocytoma or mixed glioma, and was probably infiltrating the "good" brain cells with its characteristic octopus-like tentacles; thus the risk of a bad surgical result outweighed potential benefits. The conclusion: I had an inoperable brain tumor. A wait and observe approach was recommended. Although I had tremendous faith and respect for my doctors, I felt I had to take my own initiative to investigate my disease and to manage my own health.
Thus began an extensive search for answers. With the help of a loving family and supportive friends, I garnered the strength to seek additional opinions, and to hopefully find the latest and best treatment modality. I quickly realized that such a search was very idealistic: there was no collective opinion or single new treatment. Rather, I encountered vast disagreement about my disease and the proper course of action to defeat it. This was, at first, very unnerving!
The myriad of treatment options suggested ranged from immediately starting radiation therapy to having a biopsy to determine the exact pathology. One doctor said that "the tumor was there to grow," and recommended immediate partial resection rather than waiting until it became more infiltrative and perhaps more aggressive. Another warned that a partial resection in and of itself may make the remaining tumor more aggressive. Still others recommended new (and in the mid 1980's, experimental) forms of radiosurgery, and one doctor said that regardless of what action I took, I would not be alive in five years.
I also struggled through numerous medical periodicals and research studies, many of which had varied results and conclusions. This further confounded my attempt to ascertain the primary treatment available for my disease.
With all of my research and through all of my meetings and conversations with some of the most renowned neurologists and neurosurgeons in the country, I could not find consensus. What was imparted to me during this process was a wealth of information. With each new consult I learned more about the disease and became better equipped to ask more informed questions. Becoming well acquainted with the different schools of thought on my tumor type, I came to view each new resource and the multitude of information collected as part of a learning curve that would assist me in making the most important decision of my life. While I could easily have been frustrated by the lack of consensus, there was some benefit from all of the disagreement in that I learned about the risks and potential benefits of each treatment option. In the end it was this process that enabled me to evaluate the treatment choice with which I would be most comfortable.
Regrettably, not everyone diagnosed with a brain tumor has the opportunity of time; some are faced with life-and-death decisions which may be ultimately made for them and not by them. For many patients, however, there is some opportunity to learn more about the disease and varied treatment options. The fact that different protocols are available may be regarded as a positive factor; considering that apart from statistics that tend to eclipse the individuality of a person and his illness, there really is no way to guarantee how a particular treatment will affect an individual or his disease.
The challenge of coping with the absence of consensus certainly can be daunting. At first it can seem to pre-empt all hope for recovery. It may be possible to mitigate this negative spiral by focusing on the management of your situation, hopefully with the assistance of others that you are comfortable with. First, it is critically important to maintain a positive attitude and never dismiss the power of hope. Next, it is necessary to secure as much information as possible from reliable sources, including unbiased caregivers as well as patients and families who have knowledge and experience with the same tumor classification. It is similarly important to logically discuss and analyze all of the information obtained with family and trusted friends.
The final step, and in my opinion the most crucial, should be accomplished with a delicate balance of determination and respect. Challenge your physicians to respond to the opinions of their colleagues as well as to your own concerns, so that all of the issues are clear to you or someone you can rely on. Only then will you be armed with the resources necessary to make a decision in the absence of consensus.
Today, I am a thirteen year post-treatment survivor. Fortunately, for those going through a similar experience to mine, the combination of specialized organizations such as the Brain Tumor Society and the internet revolution make it much easier to access information about treatment options, to locate other patients with similar diseases, and to receive support and guidance, than ever before. Such organizations exist to provide help and purvey hope. Hope is an invaluable asset to us all in coping with illness, as well as with the frustration of not being able to identify a single best treatment option. And, hope becomes even more vital when affirmation as to the most appropriate measures for managing your disease does not exist.
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