Pseudoscience Didn't Work

13 months ago, in late November of 2013, my husband of 25 years was diagnosed with stage IV follicular Non-Hodgkins Lymphoma. It was found by our gastroenterologist during a routine colonoscopy. A small lesion had begun to form in his colon which was the earliest sign that the cancer was attempting to invade organs from the lymph system.

He had a bit of a painful bone marrow biopsy which let us know the disease had not invaded his skeletal system. Then we spent a long day down at the MD Anderson (now UF Orlando Health) Center in Orlando having tests after tests run. The entire time, my husband was convinced it was not a real thing..that it was a "false positive" until his results came back from the PET scan, MRI and blood work. His scan showed him lit up like a christmas tree with affected nodes in his neck, chest, armpit, abdomen and pelvis. He acknowledged the reality and we got to work. We were referred to a really great oncology group and Dr. Johnson and Dr. Sheikh began mapping out the battle plan.

In January, 2014, just 3 weeks before my husband was to begin chemo, I was rushed to the ER with acute pancreatitis. They told me that it was good I had come in because that condition could be life-threatening. I was put on an IV and given nothing to eat or drink for 3 days and then went into surgery to have my badly diseased gall bladder removed. My pancreas recovered. All I can remember is asking the doctors and nurses to please get me well so that I could be with my husband when he started his chemotherapy. I was lucky. When my husband walked into the infusion center at South Seminole hospital, I was right there with him.

For 5 months, every 28 days, he had two days of chemo. His treatment was what is considered the gold standard for this particular type of NHL, two drugs, Rituxin and Bendamustine. As the drugs built up in his system, the side effects started to really show and he would have what they called a "chemo crash" about 2 to 3 days after his treatment. He took his nausea meds and slept a lot and ate lightly and took short walks and, the entire time, he kept at his part-time job as a crossing guard at a local elementary school. I started calling him "Superman." After two rounds of chemo, they did a CT scan that showed the disease over 80% wiped out and, after five rounds, he was completely clear. We were ecstatic.

I need to explain that we are atheists and skeptical thinkers. We didn't pray, We didn't go on any of the many weird and outlandish diets that we were told we must because of very different reasons by people whose evidence of the efficacy of said diets was only anecdotal or the result of some very incomplete and biased "studies." We went with a balanced diet, light exercise, adequate rest, keeping to a routine as much as possible and we investigated and approved of the science used. He was told he shouldn't eat meat. That didn't go down well with him. He is not a big over-eater but he likes his chicken, fish and occasional red meat, his beer and occasional glass of wine and his sweets. He doesn't smoke. I will say that he did have a little bit of "herbal" help with the side effects but everyone, doctors, scientists and lay-people, know THAT helps.

We had the last of his every 4 month CT scans, today and it was clear as a bell. So now, he will go to every 6 months and then to every year. Are we grateful? Hell yes, we are! We are grateful to the scientists who did the research, the oncologists and infusion nurses who followed that protocol and monitored his progress and the emotional support we received from family and friends. We could not have made it through without that.

But no, we don't thank an invisible deity, of whose existence we have no palpable evidence. We did not indulge in pseudoscience and don't think that "healing energy" exists unless that's another name for love. We DO believe in love. My husband is well-loved. Knowing one is loved has a lot to do with our attitude when facing illness and adversity and it helps. It isn't a cure, but it helps us bear the worst of the discomfort and the bad days that come with any chronic illness.

Today, I learned that a young girl, a child, died after refusing, with her parents' blessing, to continue chemotherapy for leukemia. Rather than admit that refusing the treatment caused this little girl's death, they are saying that she died of a stroke because her system was damaged by the chemo she had prior to her going on alternative and "spiritual" care. I don't buy that for an instant. She was encouraged to trust superstition and pseudoscience and it didn't work. I will be willing to bet that behind every wild claim of such methods actually working, there is a rational, scientific reason why a patient survived or improved that has nothing to do with wheat grass enemas, massive doses of supplements, laying on of hands, prayer or christian yoga (I wonder how that is different from regular yoga).

There are a lot of people who fight cancer who will not be as fortunate as we are. Research is ongoing and early detection is making a big difference. Genetic research is opening new avenues for possible treatments and cures. But, it won't make it in time for some. Some might have some hidden well of physical healing abilities within themselves that will come in to play and will be hailed as a "miracle." I am all for that. But I am sick and tired of prayers and pseudoscience being chosen over the real science, especially when I hear that a child has died from such foolishness.

Like a friend said, who is going through this awful battle with a loved one, "If prayers and wishes were money and marijuana, we'd be doing better than we are." And no, there is no proof that weed cures cancer. It just helps make chemo and the other symptoms bearable and helps the appetite along. When you have cancer and are taking chemo, eating is not easy. Marijuana makes that easier.

We are celebrating because we have the right to. My husband, with the help of science, beat the beast. But we are  not forgetting those still fighting and those who lost the battle. If you want to do something for these people, support cancer research. A few bucks to buy a pipette for a research lab goes a lot farther than prayer for actually doing something.

Dear Mr. President, An Open Letter

I hope today finds you in good health and good spirits. I really care about that. I feel that you have been gloriously dignified in the face of a lot of garbage that most presidents have not had to face. I voted for you both times, and am still glad I did. I also admire Mrs. Obama who is a lady to the core and that core seems to be solid steel.

I am a senior citizen on the cusp of 70. My husband is 75 and, just this past year, he fought and won a battle against Non-Hodgkins Lymphoma. The co-pays, even with our Medicare Advantage plan, were above and beyond our ability to pay and we had to appeal to the hospital to forgive the balance. That is one of the reasons I am writing this open letter.

The Republicans, now in charge of the congress, seem to have set their sights on our Social Security and Medicare...benefits we worked hard for and EARNED. For years, we have gone without proper COLAs and have had to pare down our lifestyles to the basics only. I don't know how much longer we can afford the Internet. We don't have a big nest egg because our 401K was pretty much wiped out during the Bush recession. We were basically blue-collar workers who didn't make a mint but we enjoyed a few tiny luxuries and a vacation here and there until the recession hit. Social Security, Medicare and the tiny amount my husband makes working 10 hours a week as a crossing guard for the county is all we have. I retired early on SS Disability and the Republicans are gunning for that in a big and very nasty way.

Oh, we have some equity in our home (we are still making a mortgage payment every month) and a few acres of land we were dreaming of retiring to in the mountains of West Virginia. That dream is dead and that land is not selling because that area is so economically depressed. We are stuck here, in crowded, hot Florida where the prices can be just a bit higher than other states. And Rick Scott (excuse me while I shudder) is our governor. No, I didn't vote for him. If the congress gets its way with their nefarious plans for what is one of the best things the government of this nation ever did, we will be out on the street. We have debts we are struggling to pay. We don't take vacations, these days.

Now I am reading your agenda at White House.com and reading articles on several online publications which state that protecting Social Security and Medicare is not a part of your plan or even one of your priorities. Mr. President, not all of us older Americans are curmudgeonly conservatives who vote GOP. I know that the Republican party has manipulated the less properly informed among us to vote against their own best interests, that their ignorance and racism have played into that, but that isn't us, Mr. President, and we are going to suffer. I don't think I will do well in a shelter or out on the sidewalk putting things in a stolen grocery cart. Please don't punish all of us for what some have done.

You have your veto pen. You can, at least, stall the raiding of OUR coffers. We earned our monthly pittance and, without it, we are toast. YOU CAN HELP. Please, Please, Mr. President. Don't forget us. Don't let it be open season on the elderly poor. Eighty years ago, longer than I have been alive, FDR signed Social Security into law. And for eighty years, the GOP has been trying to take it down.

Right now, seniors comprise approximately 12.9% of the US population. That's a lot of people, and a lot of these people are not doing well financially, due to either poor planning or unforeseen reversals in the economy or health crisis problems. Should we be kicked to the curb because of our age or bad decisions? I am not ready to die without medical care, in pain and in poverty. I still have a lot to contribute. If nothing more, I have an articulate voice for progressives and a left-leaning vote.

I can get by without a yearly vacation, a lot of new gadgets, or a new car every couple of years. Our old 2007 PT Cruiser is paid for and it runs. We are glad to have it. BUT I can't get by without food, shelter or healthcare and that is what the right wing is trying to take from us. It is OUR money. WE earned it. Reagan opened our purse and raiding SS funds has become a scandalously regular occurrence. Don't let it happen again. Rather than allowing more cuts, SS and Medicare should be expanded and improved. Coupon care is not going to work, either and that idea needs to go into the dumpster where it belongs.

It's very easy for elected officials to not think about the seniors when they are happily enjoying their large pay checks and their tax-payer supported health care. They don't have to worry about deciding between food and prescriptions and some of the co-pays on prescriptions, even with Medicare Part D, can be out of reach for many of us. Between the way this congress has treated women, minorities, poor children, the aging poor, and the environment they deserve some kind of trophy for being the most cruel, nay...malicious congress in US history. I am just asking that you don't add to the disillusionment I am already feeling. You CAN help if you just will.

Thank You,
Robin Westbrook

Giving Up

I wrote a blog, once, about the experience of mothers of adoption loss which got hundreds of hits a day. I even was in the top 5 blogs on the subject when they were doing that. Now, I get less than a whimper and a peep when I write about what concerns me most. I refuse to be a whore and go back to adoption.

This leads me to believe that, although many have praised my writing abilities, either they were prevaricating or I am dry as dust and no one wants to hear what I have to say. It has gone the same way on my FB page. Very few people follow me as opposed to when I was first active there.

OK, my time is over. Anyone who aspires to be a writer, even at my advanced age, knows that a writer is only as good as the size of their readership. I have had some nice people in Google Circles pass my blog URL around but I got a grand total of 14 hits, yesterday. What good is what I write if so few read it?

So I am not going to subject myself to any further disappointment. Bye, Y'All.

Karl Marx Got A Bum Rap

Contrary to the delusions of the educationally deprived citizens of this nation, Karl Marx (May 5, 1818 - March 14, 1883) was not the bringer of communism to the eastern Europeans and Russia. That was Lenin, I believe. According to Wikipedia, Marx was an economist, a philosopher, a sociologist, a writer and, yes, a socialist in the real sense of the word. His most famous quote, that is often taken out of context, is here, IN context; "Religious distress is at the same time the expression of real distress and the protest against real distress. Religion is the sigh of the oppressed creature, the heart of a heartless world, just as it is the spirit of a spiritless situation. It is the opium of the people. The abolition of religion as the illusory happiness of the people is required for their real happiness. The demand to give up the illusion about its condition is the demand to give up a condition which needs illusions."

The image that the word "socialism" brings to most people is Nazi fanaticism and Stalin-esque totalitarianism and cruelty. That's not the whole story and people would do themselves a favor to further investigate what socialism really is. There are a number of nations in Europe who have socialism heavily figured into their governmental structure and there is no repression of speech, opportunities or (unfortunately) religion. However, these nations tend to be more secular than most. Here in the US we have economic repression that boggles the mind of the First World nations and let's face it...we are on a greasy, downhill slide to Third World status. Socialism and atheism are dirty words to the true believers in god and the 'Murrican way. The current congress and their Billionaire Owners Club (BOC..my title and I like it) are spinning and using those words to keep the fear among their minions who vote according to the pulpit at a fever pitch...and they still don't know what they really mean.

Not all atheists are socialists and not all socialists are atheists. While I am not convinced this person ever really existed, the Jesus of the bible would have to be called a socialist in his views of our responsibility to the poor and suffering. I know political conservatives who are atheists. I happen to be both atheist and socialist. I am an atheist because I am a skeptic and require real evidence, not mythology. I am a socialist because I am tired of the poor being criminalized, the rich being made richer from our labors and because I like fairness and justice.,,,not exactly revolutionary values but it may come to that.

Right now, we have a bloc of voters who either stand to gain by siding with the fat cats or who cannot do their own thinking without someone behind a pulpit or a politician evoking the name of god. They are anywhere from smugly stubborn to dangerously fanatical. Christianity has become a monster as has Islam and any number of other beliefs. Perhaps Islam is the most dangerous, FOR THE MOMENT, because their call to violence against the non-believer and the "heretics" is most bloodily overt in their holy texts. But Christianity is catching up.

The world, and especially this nation, has a 2000-year (give or take a hundred years or so) habit. Some get their fix from church and some from texts and some from just refusing to question their own beliefs. But a fix it is..as real a fix as taking a needle to a vein and injecting the mind-altering poison, directly. A friend, Barry Groover, posted a chart that is a good representation of the drug-like effects of religion. It works for me.

I have a hope that we can see how caring for each other is not a bad thing and that a nation this size needs a strong central government with a genuine, legislative social conscience to balance out our technological advanced and thriving marketplace. Right now, without that social conscience, we are a table with three legs and are bound to fall. 

There is a group on Face Book called "Religion Poisons Everything." I was raised in the church. I am still detoxing after many years of struggling out from under the indoctrination I received as a child. I find much of worth on that group. I know what it did to me. I see what is does to others and I want to cry. Religion is being used to justify racism, violence towards women, minorities and the poor and to form an elite class. I shudder to think what will happen if this is allowed to continue with nary a challenge. That is where Charlie Hebdo was pointing us with their satire.

Face it folks. Supernatural solutions for secular problems don't work. In fact, they don't exist. I am a small voice in a big cacophony of noises. But more and more, voices of reason are trying to be heard above the din. The ones who come after us will have to be louder and stronger and more well-organized. I think they will be. I smell blood on the wind.

The Hard Truth

My husband thinks I am a talented writer. Other family members and friends think I am talented in this regard. I have been called "eloquent" and "articulate." I sometimes wonder if those are just words to use to avoid saying "glib." I am finding that I am not getting much in the way of readership and no comments to speak of...a couple of nice people have put themselves out there to make a comment, but I don't have near the audience I had when I was banging the keys, posting about adoption angst.

It seems my own personal growth has made me less interesting. I know that a writer needs an audience and I either don't know how to generate one or I don't post things people want to read. I may not be "edgy" enough or friends from the adoption arena may be angry that I have moved away from the center of that cauldron of perceived trauma.

I don't want my blog to just be a journal of my take on any subject. I want it to be thought-provoking. I want to be one of those writers whose essays are linked by many and passed around like a particularly interesting rumor. My ego must be massive. Now THAT'S personal. I just want what I say to make a difference. Perhaps, I am looking for a legacy to leave since I sure won't be leaving any wealth behind.

A lot of folks might say I should go back to adoption separation as a theme but I have outgrown that one-issue thing. If I were to put it on a level of importance in my personal life, right now, it would be down the line a bit. I am more concerned about the threat to the separation of church and state in the United States than I am about something that happened to a lot of us women who grew up in the Baby Scoop Era and over which I had no control. The Original Birth Certificate of the adoptee is not my raison de vivre. I am more anxious about the preservation of Social Security and Medicare than I am about open records. I am tired of infighting about who has it worse, mothers or adoptees. We have bigger threats facing us.

So I have a choice. I can either be a whore and write what I think the people I know want to read (adoption, adoption, adoption), or I can continue to offer opinions on the things I regard as important. I probably also need to learn how to market what I write. I am a techno-challenged, older writer. I know how to link, how to upload and download and that is about it.

I have addressed current events. I have cleverly inserted pictures to go with the theme of the essay du jour. I have recommended this blog on Google and Facebook. I have a feeling that most folks that take the time to look give me a 'meh' as far as being able to hold their interest. Yeah, I am a bit discouraged but I will be back at it, one way or another, until I get it right. I am stubborn that way.

Right now, I am going to get some cheese to go with my whine. I haven't had breakfast.

Je Suis Charlie

You know, even though I will defend to the death the right for the Charlie Hebdo-type comic images to exist, and support what they do as free speech, I have to say that a lot of what I see in that genre repels me, personally. It doesn't OFFEND me...it just makes me a wee bit queasy. I am not offended by images of gay couples kissing (actually, I find those kind of sweet) but I don't want to see pictures of ANYONE'S private sex life or dripping genitals. And pictures of rape of any sort totally appall me. That's why I have a line I won't cross in what I post. Sue me. Je suis Charlie to a point. Like them, I also want my right to pick and choose what I say, post and endorse.

To me, what CH has published isn't blasphemy. To find something blasphemic, one would have to believe and I don't. No, I find it VULGAR. Some of the images around the web depicting the generally accepted image of the possible "Christ" figure being raped or indulging in sex, gay or straight, I find vulgar, too and I am not a friend of fundamentalist religion of any sort.  Those pictures are sophmorically vulgar, actually. Like religion, porn should be private and personal, as well and not forced on the general population. And, like any idea, religion is not exempt from satire or criticism.

Now that aversion to vulgarity could be my southern belle upbringing or old tapes in my head but I don't think so. I think it has to do with respecting the dignity of all humans. I don't find it disrespectful to the religion so much as disrespectful of the viewer and society in general. Having said that, I will never tell anyone what they can post on THEIR timeline and what kind of comedy they should enjoy.

I look at a lot of those images as they pass my way and see a lot of anger beneath the vulgarity. I think I can understand that. I am angry at our own American Taliban, the far-right, Dominionist, fundamentalist christians who want to impose their interpretation of old, scattered, bronze-age texts that have been re-vamped and poorly translated on this nation as law..a kind of law that would set us back, socially, over 100 years. The bible, as we know it now, is a product of the people from a time when supernatural explanations were all they had. No one really knows who wrote what and as a book of history, it sucks.

You see, there is something else I find even more vulgar. I think hate is much uglier than any kind of pornographic image. The ones who want to impose their religion on the rest of the human race talk a good talk about a god of love and peace, but the things they do, in the name of that god, are anything but loving and peaceful. And tolerance and acceptance of differences in people and cultures is off their board, entirely.

No religious belief gives anyone the right to murder, terrorize or try to enforce a type of lifestyle or laws on others. When the terrorists, foreign and domestic, take lives or try to intimidate and control and say they are doing the will of some unseen, unproven deity, then I have to call them on their bullshit. If you don't think that we have American Terrorists that are a product of fundamentalist christian religion one has only to look at the KKK, the killers of doctors providing reproductive health services to women, any number of "militias"...oh they are not overtly visible and are just emerging from the shadows, but they are bent on world domination, just as avidly and fanatically as the followers of fundamentalist Islam.

That is why, as icky as I find some of the products of Charlie Hebdo and others like them, I am with those hundreds of thousands of sane, civilized French citizens who marched against the horrific act that was more pornographic than any pictures of Islamic genitalia. That is why I can say, "Je suis Charlie."

Besides, I'd rather be Charlie than be like this bunch. Now THIS is offending me.

France, The Frozen North and Hollywild

Yesterday and the day before there was much death, chaos and mayhem. In France, the specter of religious extremism and hate reached out its ugly, violent hand and people died. In the frozen north in Michigan and western New York State, areas all too familiar to me and to my husband, traffic pile-ups caused by the weather killed and injured and placed many more in danger. My heart still hurts for all the dead and injured.

My heart hurts just as much for a tragedy that won't make the international news. Early, yesterday morning, an electrical fire started in a barn used to house primates at a small, locally-owned "zoo" in Wellford, SC, just north of Spartanburg, SC, my home town. 28 animals, all primates, died of smoke inhalation. 14 lived. One of the victims was a 34-year-old female chimp named "Rosie" who loved to paint and knew no other home. I probably saw her and fed her when I went to that zoo about 28 years ago.

PETA and other animal activists have been after these people, hoping to shut them down and have the animals placed in better, larger facilities. To their credit, the owners of Hollywild did try to clean up their act and improve the lot of the animals. But keeping animals in unnatural and confined spaces is just wrong in my view of things. I guess zoos have their place in education, maintenance of endangered species and scientific observation, although observing animals in the wild would be more productive. But placing animals in cages to entertain people is not exactly being animal lovers. Hollywild also had christmas light displays and a picnic area. It was a draw for locals who didn't have a lot of money but wanted to have a day out.

Understand that these were not domesticated animals. You can't tame these creatures. These were animals that should have been roaming free in jungles and on savannas, living as their natures intended. I am, sadly, hoping that this tragedy will shut the operation down. I am not a member of or a supporter of PETA. Their stances seem too rigid and their actions too over-the-top for me, and I am an unrepentant carnivore. But I agree with them about Hollywild. If there is such a thing as benign cruelty, an oxymoron for sure, that was what I felt when I visited that place.

So, in the past couple of days, there has been death and there have been injuries, fear and trauma. Let's not place Rosie and her friends lower on the ladder than the other victims. They didn't ask to be where they were and they were the most innocent of victims.


RIP Rosie and all who died with her. Here she is, painting a picture for a keeper.