Fact: chemo kinda sucks.

I had chemo on Monday, and had what seems to have been an allergic reaction to it. They pumped me full of anti-histamines, extra steroids, gave me a nebulizer treatment, etc. I've been trying to cut down on the steroids that I'm on. My daily dose is 2.5mg of decadron. They give me 20mg of decadron just as part of my pre-meds, and then on Monday, more of a different kind of steroid when I had the reaction. Now my body and mind are still stabilizing out from it. Very low energy, feeling down and totally out of it.

So forgive my lack of content recently. I have lots in the works in the back of my head.

My trip to National Institutes of Health

We drove down on Tuesday and drove back again last night (Thursday); the appointment was on Wednesday. They've taken me off the chemotherapy that I was on because it isn't effectual on the mets in my brain. They're looking at switching me over to a new, more targeted chemotherapy. They're going to try to obtain some more tissue samples so they can do some genetic sequencing to see if my tumor has any genetic markers that respond to certain therapies. And in the event that they don't find any, or it's taking too long, they're going to put me on one medication that is targeted toward something for which I already tested positive - it's a receptor called "HER2" which responds to herceptin and lapatanib. Also, a broad spectrum cytotoxic agent (more traditional chemotherapy)... Dr. Fine suggested "Taxol" or something in that family, based on Fine's instinct.

Anyway, Dr. Fine (head of neurooncology at NIH) told me that the sizes and locations of the brain mets are not likely to be causing me any kind of neurological effects. He thinks my balance issues are due to the weakness in my legs caused by the steroids. He doesn't think I have any neurological symptoms right now from the brain mets. Also, apparently the voice issues (I've been vocally impaired for about six months now) are very common with the use of Avastin, so if I discontinue that I may get my voice back. So right now we're going to wait on them to get the tissue samples sent to NIH and do the sequencing and see if there are any targeted agents they can use, and I'm going to start weaning down my dose of steroids very slowly. If it takes too long, they will probably start me on the above-mentioned combination of herceptin/lapatanib and taxol or something similar.

So that's what we found out at NIH. Radiation is back on the table as a possibility for the future if the brain mets get to be a problem. I feel a lot better knowing that there are options - not just options for treating the cancer but options for treating the side effects of the cancer treatment, too. I'm frustrated with being so weak and not having a voice.

Suicides among Veterans

MSNBC gives me the following statistic, published in the New York Times: every 80 minutes, a veteran commits suicide. Nicholas D. Kristof, author of the article, writes:

More than 6,500 veteran suicides are logged every year — more than the total number of soldiers killed in Afghanistan and Iraq combined since those wars began.

That figure is outlandish. We have watched these figures climb month after month for years now. We are happy to create services to find housing and employment for our veterans, as well as care to physical wounds (such as Project Facade - a service to help reconstruct severe facial injuries to veterans - website down due do bandwidth issues as of 11:06 EDT on April 16).

We're so afraid to think that these men, whom society tells us are supposed to be the strongest, most fierce men in the country, might have some kind of weakness. Does it reflect on some sort of deep psychological American weakness? I say yes.

In this country we fear our mentally ill, because those who do not suffer mental illness often don't understand it. There's a major hole in our national understanding of mental illness - of post traumatic stress and traumatic brain injury. Their injuries are invisible, but very, very real nonetheless. And the deep psychological weakness of Americans to which I refer is this widely held, even subconscious belief that somehow being so emotionally affected by these experience makes them weak. It diminishes their hero status.

Furthermore, there are many, many scientifically rigorous studies that demonstrate that men are less effective communicators than women. This is no sexism: this can be shown plainly using functional Magnetic Resonance Imaging (fMRI).

Other causes include the limited amount of resources that mental health practitioners have to treat our young men. For example, it is not an uncommon practice for a practitioner to prescribe an SSRI - a type of anti-depressant known to occasionally cause suicidal behavior. This can be largely mitigated by sufficient follow-up appointments to monitor for this behavior, but the practitioners simply do not have the time. Another statistic from the New York Times article:

Patrick Bellon, head of Veterans for Common Sense, which filed the suit in that case, says the V.A. has genuinely improved but is still struggling. “There are going to be one million new veterans in the next five years,” he said. “They’re already having trouble coping with the population they have now, so I don’t know what they’re going to do.”

Mental illness requires more than a week or two of treatment - and often times it can never be cured. We simply do not have the human resources to fill these needs. We need more resources. Treatment for PTSD or TBI requires months or even years.

However, there is at least one thing for which the US Court of Appeals and the group Veterans for Common Sense has done for which it deserves credit: "Last year, the United States Court of Appeals in San Francisco excoriated the V.A. for “unchecked incompetence” in dealing with veterans’ mental health." If there is anything more damaging than not receiving any treatment at all, it is receiving treatment from incompetent practitioners. Rooting out these people and removing them from treatment programs is definitely a crucial step to improving our programs.

The ingredients are here:

• Closer follow-ups and longer-lasting treatment programs
• Closer monitoring of patients receiving SSRI anti-depressants
• Re-education of the American public regarding mental health in general
• More psychologists, psychiatrists, therapists, psychiatric nurse practitioners, and other mental health professionals being employed specifically for the benefits of veterans

We need to make this a more central issue when we discuss veterans' issues. After all, without one's mental health, it is nearly impossible to achieve other vital aims, such as securing housing and employment. We owe it to them to restructure the funding of the veterans' program, to put a greater focus on their mental health care, which will restore them to confidence and competence in dealing with their own lives. Our brave young men, our heroes, men who put their lives on the line in the name of democracy: they deserve far better than what they are receiving.

Education: Still an American Value?

The Bushes have a long history with Yale, one of the finest educational institutions in the nation, and take pride in that connection. Mitt Romney went to Stanford and Harvard. Even Rick Santorum, with his infamous "snob" comment, has three degrees. So why is it that such a large portion of the conservative movement have suddenly begun to disparage education rather than embrace it as an American value?

It seems education was a non-partisan issue (and universally considered to be beneficial) until very recently. During the 2008 election, Barack Obama was labeled an ivory tower "elitist" by conservatives because he was informed and articulate. And this acceptance of ignorance has become even worse during this election. Herman Cain's following seemed by and large undisturbed by his dismissal of a president's need to know basic foreign policy.

Perhaps it's my New England upbringing that causes me to be such an "elitist snob", but one of the things I admire most about Barack Obama is that he managed to earn an excellent education despite growing up with considerable financial hardship. Even though Republicans hit him again and again with concerns of his lack of foreign policy experience, he was certainly well-versed in it. Yes, he has his weak points (the economy comes to mind), but he at least wouldn't be caught dead speaking a word like "Ubeki-beki-beki-beki-stan-stan".

When did American conservatives stop believing that intelligence, education, and articulation were important qualities in a president? Time after time throughout this primary season we have seen Republicans blithely forgive these displays of ignorance. Why are these basic mistakes considered acceptable? Is it resentment, borne of racism, felt by conservatives that a black man should be allowed to receive so excellent an education? I imagine white Republicans would be far less threatened by Herman Cain, who could not hold a candle to Obama's brilliance. Or perhaps it is because of the deterioration of the quality of education we receive here in the U.S. Are Americans simply not capable of recognizing the short-comings of this season's candidates? Maybe the true "elitist snobs" in our nation - like the ones who drive multiple Cadillacs and pal around with Nascar team owners - have given a bad name to the educated. Is an MBA now automatically associated with Wall Street corruption?

I do not mean to speak only of a university education. Vocational schools and apprenticeships are incredibly valuable as well. Not everyone fits into the erudite university mold. Electricians, mechanics, and chefs are all incredibly valuable to our country. They make up the backbone of functionality and infrastructure without which academia, among other so called "higher institutions", could not exist. These people, too, are pursuing greater knowledge, bettering themselves and their country.

I look forward to the day when the acquisition of knowledge is celebrated again. Education should be honored and respected. I want to live in a country with a leader who knows everything he possibly can about running countries; a leader who continually strives for greater knowledge about the world around him or her. I want to be proud of my leader, and since 2009 I have been. Barack Obama has a great mind and it is a sin to believe that having a leader possessing so extraordinary a mind is anything other than a blessing to our country.

Did Robert Bales suffer a Dissociative Fugue?

Sgt. Robert Bales has been almost universally described by his friends and family to be a wonderful, warm person. Sgt. Bales' best friend growing up was a handicapped boy, and he is a loving husband and father. Is this the type of person who murders seventeen innocent Afghanis? It is nearly impossible to believe that a person who has such a long record of being so kind and so empathic can suddenly exhibit such sociopathic behavior. The mainstream media says he simply "snapped" under the stress, but in the world of clinical psychology there is a diagnosis that fits this particular set of behaviors; a diagnosis which is more specific than "Traumatic Brain Injury" (TBI) or "Post Traumatic Stress Disorder" (PTSD). It is called a "Dissociative Fugue".

A dissociative fugue is a rare psychological event characterized in the DSM-IV-TR (the Diagnostic and Statistical Manual of Mental Disorders) by sudden travel away from work or home, amnesia, and often a drastic change in or loss of identity. Typical episodes last a few hours or days, but in extreme cases sufferers have remained in the fugue state for years, creating entire new lives for themselves, during which they do not remember their previous lives. When they finally "snap out of it", they are left with only vague memories of their "new" lives. (Bales’ attorney has mentioned that Bales is experiencing memory problems.) They turn around and go back home. It is very rare that a person experiences more than one episode in his or her life.

Dissociative fugue is more common in those who have PTSD or recently suffered an extremely traumatic event. Just days before, Sgt. Bales had witnessed a close friend of his lose a leg in a bombing. This is on top of the Bales' financial and marital troubles, and after suffering an injury to his own foot. Bales was in extraordinary circumstances and emotionally vulnerable.

Suicide rates in our military are rising rapidly and are statistically linked to the number of tours of duty served. This administration gives a lot of lip-service to identifying and treating PTSD and other mental illnesses as early as possible to prevent these sorts of tragedies. Typically, though, one of two things tends to happen: either the soldier is too proud to truly reveal the depth of the emotional injury he or she is suffering, or the soldier is given an anti-depressant. Anti-depressants only work on a portion of the population, and the kind of intensive psychotherapy needed to face the complexity of one’s emotional issues is impossible to deliver in a military setting.

I am not saying definitively that this is Sgt. Bales’ diagnosis, nor am I saying there is no justice to be served. I am, however, saying that PTSD and TBI are complicated diagnoses that commonly occur alongside other diagnoses, and Dissociative Fugue is a diagnosis worth exploring, as many of the diagnostic criteria seem to fit Bales' behavior and circumstance.

We need to find a different way to address mental illness in our military. The average human psyche is ill-equipped to handle four tours of duty. Long-term, constant exposure to extremely high stress is breaking our beloved troops and we owe it to them to find ways to care for them. I believe, as a nation, we are coming to see mental health as being every bit as important as physical health to our troops. We are asking far too much of our young men and women.

So let's put a cap on the number of tours of duty a soldier is allowed to serve. Let's implement more thorough screening. Let's give more opportunities for leave to those who are suffering the worst. And when our soldiers return home, let's provide them with the best mental health care we have. I believe that if more interventions were in place for the mentally ill in the military, had we been paying closer attention, then this massacre would not have happened. Let's see that this doesn't happen again.

Occupy Activists Work to Enforce Volcker Rule

Occupy Wall Street camps have grown smaller as the winter has set in. They’re nearly abandoned at night as people retreat into their warm homes to sleep in their warm beds. General Assembly still has, in many locations, reasonable attendance, though certainly not to the same degree as it had in warmer weather. Many of the camps have been disbanded altogether due to local law enforcement – in fact, we are very lucky in New Haven to have such a cooperative police force such that we can remain assembled despite the weather and perhaps a decrease in morale. In many cases, the people that are left at the formerly occupied sites are the extremists and the homeless, leaving the almost completely abandoned camps a bleak sight.

Just as the movement was beginning to garner the respect and recognition needed to elicit real change, participation floundered due to weather and weariness, and in many places increasing police involvement (again, less so here in New Haven). Much of the respect and positive attention the Occupy movement had been receiving has decreased considerably.

We have come too far to let this movement die out because of a change in seasons. The movement will have to be rebuilt as Occupiers return in the spring. Hopefully, the return of the warm weather will hail a fresh influx of protesters and the movement will be injected with new vigor. Just as was done the first time, last autumn, the movement will have to build again, will have to attract attention and organize. But this time, we have a head start. The movement has organized into several different groups with different goals, and this February, one of those groups has made a remarkable achievement. The group calls itself “Occupy the SEC” (and their website can be found here: www.occupythesec.org).

The SEC (Securities and Exchanges Commission) is a federal agency tasked with the implementation of the Dodd-Frank Act. But before the Dodd-Frank Act can be implemented, the SEC is required to seek public comment. And so formed Occupy the SEC – a group of Occupiers with considerable experience in the financial industry. Led by Alexis Goldstein, the group produced a comment letter on section 619 of the Dodd-Frank Act, also called the Volcker Rule. The purpose of the Volcker Rule is to regulate proprietary trading by the banks, and to increase transparency. The comment letter is 325 pages long, answering 244 out of 395 questions proposed by the SEC regulators in the request for public comment. The Volcker Rule originally was full of so many loopholes and exceptions as to make it essentially self-castrating. Thanks to the incisiveness of Occupy the SEC, however, the Volcker Rule has the potential to turn into a very powerful regulatory statute, should the suggestions be followed. The group has demonstrated an unexpectedly keen and thorough understanding of the section.

The letter was extraordinarily well-received. Several prominent financial bloggers and publications gave high praise, including Felix Salmon of Reuters. It’s been enough to make many of the movement’s detractors take a second look, enough to make people question their notions of this movement as just a directionless group of dirty hippies. Now, we are finally able to show the world that we are organized, that we do have a purpose and a goal – several goals – and have the talent and ability to call for the change we’re seeking. Yes, the movement has made other contributions and comments of similar quality and professionalism, but none have been so high profile. The reputation of the movement is critical to the sustainment of the movement, and this letter achieves that.

Part of the beauty of this movement is its free-spirited nature. It has drawn independent thinkers, people who are not afraid to be bold and outspoken about their views. Incisive minds like that of Alexis Goldstein and her collaborators to continue to contribute in such vital ways. It is important to demonstrate cohesiveness. We have shared goals. Our marches are not just pleasant Sunday afternoon strolls; the encampments are not mini-Woodstocks. We are not some parody of the Vietnam and Civil Rights protests of the 60′s. We are relevant and we are now developing the organization and cohesion needed to state our purposes and make demands.

Now is the time to rebuild our morale, restate our purposes, and show the world the power of the 99%.

Public versus Private - Dealing with the State

I have Stage IV Cancer, which means I take a lot of medications. Aside from my chemotherapy (which, fortunately, my hospital in super-liberal Connecticut won't ever force me to go without even if I can't pay for it and have no insurance), I take opiate analgesics, steroids, benzodiazepines, proton pump inhibitors, and anti-depressants.

One of the requirements for me to be on Medicaid is to pay what is called a "spend down". This is an amount of money for which I am responsible because I make too much money (my only income, by the way, is Social Security Disability) for Medicaid to be free. I can submit this spend down in the form of bills, and once this spend-down has been submitted, I should be able to get almost all of my medications either for free or with very low co-pays.

I have a visiting nurse type agency with which I work that is a private non-profit. This organization provides me with a wonderful social worker who handles all the interaction between myself and my state worker. For at least two weeks now, my worker with the private agency has been making phone calls to find out why my insurance has not come through yet. My state worker has not called back. In fact, my state worker has even gone so far as to leave a message stating that only one voice mail is necessary. This is apparently not true, since she hasn't called back. So now, I can't get my medication at the proper prices until this whole thing is cleared up. We're buying small amounts at a time now, hoping to just make it until finally the spend down has been processed and I can afford my medicines.

I have several friends who have worked as contractors for the government, working alongside public sector employees, both state and federal, who have seen a definite trend in performance. Those who are employed by the public sector work within a culture where poor performance is perfectly acceptable. It is very difficult for a public sector worker to be fired, partly thanks to unions. Now, I am not in any way against unions. However, I believe there are situations in which the unions have stepped in too far. For whatever reason, this public sector workers are getting away with lackadaisical performance, with neglecting their duties, even getting away with being blatantly rude to their clients. This apathy is built into the very culture of these places of employments. It does not seem to extend to the contractors who do not work for the state - in fact, these contractors often find themselves disgusted by the performance alongside they are meant to work.

This trend in poor performance and apathy, which so many have observed, has been seen by people in all sorts of departments, including the NIH and the New York Office of Mental Health's IT department, to name a few.

I do not know that unions are the only cause of this phenomenon. What I do know, is that I need my spend down processed, and am becoming increasingly annoyed that this state worker is dragging her feet about getting my paperwork processed, knowing that I need it processed so that I can get my medications. I also know that my non-profit private-sector social worker has done an amazing job at helping me through all of the complicated and bureaucratic paperwork imposed upon me by the state in order to get my benefits. And I also know that someone needs to be evaluating the performance of employees within the public sector and be more bold with terminations and hirings.